Gina | Endo and IBS

How Gina uses Bearable to manage Endo and IBS

Managing Endo and IBS

Interview & article by Jesse Driessen.
Published 18th September 2024.

Gina lives with Endometriosis, IBS and Migraine. In this article, we chat with Gina about how she manages her symptoms, the long journey to find a medical team with the right skills to help her, and the importance of finding a supportive community.

Just to get things started, do you mind just covering quickly the main health conditions that you are managing?

So currently I have a couple of overlapping conditions. I have Endometriosis and IBS, primarily IBS-D. I also get Migraines occasionally. Those are the biggest ones.

I'm not so familiar with the different types of IBS, you mentioned IBSD. What is that?

It’s irritable bowel syndrome. There’s like three different ones that people experience that I know of. So IBS-D is predominantly diarrhoea, so looser stools. IBS-C is predominantly constipation. And then I believe there’s IBS-M, which is mixed. So those are people who have both show up.

How would you say that your health was before you started using Bearable?

I started using Bearable in April of 2022. So at that point, my health was kind of progressing towards being a little bit better in terms of the IBS. I’d been working with a dietitian and gastroenterologist since 2020 when my IBS was at its worst. So, by that time, I’d identified some food intolerances and it was getting a little bit better.

Then last year – in 2023 – is when my Endo got a lot worse and reached this peak. So it’s a little hard to say what my health was like at that point because I was in between the two conditions in a sense. Or at least, figuring out how to manage both conditions.

So when I first started using Bearable, my health was not at its best but it also wasn’t at its worst.

Was the catalyst for looking for an app like Bearable, just that you were suddenly having to manage a new health condition?

Kind of, but what I remember was that I needed something that was easier for tracking my symptoms. At that point, I was using this really detailed spreadsheet (or my notes app) which was getting really long and hard to use. I also wanted to see correlations.

Because mental health can also be affected by chronic illnesses, I wanted to get an overview of how my mood and energy levels were doing too. Just to see if there was anything that was alarming or anything that stood out in terms of overlapping with my chronic health conditions.

To what extent did Bearable help you to address those needs?

So, Bearable is helpful for me, especially before I go into a doctor’s appointment or a specialist doctor’s appointment. Using the app it’s easier for me to get an overview of, like, how many days per month my symptoms have occurred. Breaking that down by symptom, and also across my overall symptoms, has been helpful for me.

It’s been helpful for me with my mental health and working with my therapist to keep track of my mood each month, like seeing if I have a higher amount of sad days.

Then also, because fatigue does come into play with a lot of chronic health conditions, keeping an eye on my energy levels. Basically it’s helpful for me to get those overviews in order to better prepare for appointments.

Do you mind sharing a bit more about how you're presenting your data from Bearable to your doctor?

So that’s the thing, at least for me, I don’t fully know the best way to export the data. There was one time where I tried to export a month-by-month view of how often I was having my chronic pelvic pain, for example, and I printed that out and I was gonna show it to the doctor. But I noticed it was an overwhelming amount of information.

So I don’t necessarily show them anything from the app. It’s more so that I take the data and condense it for myself, in order to be prepared for an appointment, and tell them what’s going on and what I’m dealing with.

Would you also say that Bearable's had any sort of impact on your quality of life or your well-being more generally as well?

I’m not sure honestly, because I use it for different things. Another app I use is Finch and that one I use more for my mental health, journaling or affirmations. And there’s more of a community connection aspect. You can connect with friends and send them hugs and things like that.

So with Bearable, the perspective I get from the app, or at least my use of it, it feels more introspective overall. Meaning I use it for inputting data and noticing trends and seeing how I’m feeling.

In the beginning, I did use the gratitude feature more often. Like I would write something down every day, but I just got out of the habit of that the past year. Finding the right balance with Bearable was important for me because there are so many options of things you can track. I do appreciate the variety of things you can do, but sometimes it’s a lot of information.

So I wouldn’t say I’ve noticed a direct impact on my mental health. However, if I’m thinking about it, being able to find an easier way to track things has helped my mental health in that it helped offload some of the time and energy it takes to track my health conditions and symptoms.

Like compared to if I used a less user-friendly tracker, like a spreadsheet or a notes app. So I think it does take off some of that mental load and effort and makes it easier to track things.

Would you say that more than helping your mental health and well-being, Bearable is just giving you a clearer picture of your health?

Yeah, I think it definitely does. I think that is honestly the thing it helps me with the most.

Do you mind giving me a quick overview of what your day-to-day experience is with Endometriosis?

Yes, it’s funny to think of a day-to-day experience because it varies so much.

I think my experience might be a little different than what people assume Endometriosis is because most people – when they first learn about it – assume it’s just painful periods. Whereas for me that is how it started but, currently, I’m on a very high progesterone birth control and so I haven’t had a period in over a year and a half. But I still have chronic, recurring pelvic pain due to my Endo.

I think what’s hard to parse out is that oftentimes people with Endo also have gastro issues and other symptoms. So like my IBS very well could be related to my Endo – I just don’t know for sure. But in terms of day-to-day experience, sorry, I don’t really know how to answer that.

I guess a better way to phrase that question might be, what are the things that you think that somebody should know about life with Endometriosis?

Oh, okay, that’s a very big question. So the biggest symptom I experience is chronic and recurring pelvic pain. Sometimes that includes painful bowel movements, sometimes it doesn’t. So generally with Endo, I’m trying to manage it as best I can in terms of reducing how often the pain occurs. Including reducing the intensity of the pain, but also having to accept that it’s chronic so it’s never going to fully go away.

Learning how to live with that pain and manage it better includes treating it in the moment, like with a heating pad or other types of tools. Also how to deal with that mentally, like the grief – there’s a lot of grief that accompanies living with Endometriosis because the way my body shows up and what it can handle has very much changed over time.

Learning to accept that I might not be able to do higher-intensity exercises or might not be able to do sports that I used to enjoy – things like that. Because with Endo there’s a lot of pain but also fatigue. Your body is dealing with high inflammation and then sometimes it also feels like your body is fighting itself. So there’s a lot of fatigue that shows up with Endo and IBS.

"There’s a lot of grief that accompanies living with Endometriosis because the way my body shows up and what it can handle has very much changed"

I think you've touched on a really interesting point. Ultimately, there's a transitional period when you begin living with a chronic health condition. You realise that you're probably not going to be able to do a lot of the things that you used to. It sounds like almost that's kind of an ongoing experience for you?

Yeah. I think, like you said, it feels like I’m going through phases that accompany my chronic health conditions. I definitely felt like the first couple of years, when I found out I might have Endo, it was very much just going online, talking to people, and learning what that even means or what could happen.

It seems like the list of symptoms is endless or there’s always new ones popping up that you didn’t even know about. Like, ‘Oh, that is Endometriosis too?’ It’s like a discovery period of figuring out what that looks like, and trying to see specialists to get a diagnosis or at least get more answers.

Then I would say with chronic conditions – especially Endo and IBS – unfortunately, a lot of it is trial and error. With management techniques like medications or physical therapy, whether or not they help you varies so much depending on the person.

I’m still in a phase where I’m literally just trying different things and seeing if they help or don’t help. That phase can be pretty exhausting because you’re trying new things over and over again. Sometimes the side effects are really bad and you’re like, ‘Okay, that’s not for me.’

Then I think after that it’s just management. Learning how to live with it and manage it the best you can. But the hard thing with Endometriosis is that even if people have excision surgery (the laparoscopic minimally invasive surgery) and you get it removed, it can grow back, which I feel might be unique for a chronic condition.

There’s a lot of fear and uncertainty about whether it will change, if it will grow back, and if it will get worse. Trying to accept that, taking things day by day, or trying to accept that this is how it is for me in this moment can help. Like I can only control what I control.

Were there any specific tools you use to help you to come to terms with living with these conditions?

There’s a few that might feel obvious but I think are still important to name. Talk therapy is what I started with.

I was finding that there were times when a flare-up would happen and it would feel like it’s never going to end. So it can kind of feel like: ‘What if it gets worse? What if it doesn’t end? What if it disrupts my work?’ That can be really scary and the emotions can be overwhelming in the moment.

My therapist suggested utilizing some DBT techniques (dialectical behaviour therapy) and I feel like that is helpful in separating your emotions or feelings from fact. Also, for trying to learn to let your emotions come in waves and accept them. Like just letting them pass by so that you’re not internalizing it all as much. It’s not always perfect, but I think those are the biggest tools for me.

I think one of the silver linings of having chronic conditions like Endometriosis is that you learn out of necessity to get better with boundaries. Like being vocal when you might need to take a break, rest during a trip, or say no to plans. Because if you overdo it or if you plan too much, then your body will feel it the next day.

You've mentioned how your main symptoms are essentially forms of pain and that they can be quite unpredictable as well. Does that have a big impact on your ability to plan certain activities e.g. socialise or work?

It does to a certain extent. For the first time in my life, this past year, I’ve been able to request accommodations at work. That has been helpful, but it’s one of those things where I’m lucky that my boss is very understanding. I know if your supervisor isn’t supportive, that can put you in a really bad spot.

For social plans, I’m lucky to have friends who have a shared understanding that if you need to cancel or reschedule, that’s okay. I don’t necessarily have any in-person friends that also have Endometriosis. However, I have friends who have varying degrees of depression, anxiety, or other health conditions. So there will be times when they need to cancel or reschedule and that means it’s okay if I do as well.

I’ve also gone on some trips with my mom. For example, we went to a state fair and we were gonna go see this musician. Then before the show, I started having some pain and I needed to sit down. So we adjusted our plan for a moment. We just sat on a bench, got a funnel cake or something, and people watched and waited it out.

We still made it to the show and it ended up being fine. So having people who are supportive or understanding – even if they don’t understand the condition – just that you might need to adjust plans really helps.

For work, unfortunately, there are certain jobs I would not be able to do and that wouldn’t be feasible for me. Any job where you’re on your feet all day or have to do a lot of manual labor, for example. So I have a desk job, but I still need accommodations for the days I have to go into the office.

Do you mind also telling me a little bit about your day-to-day experience with IBS as well?

Yeah, that one’s actually a little easier for me to succinctly describe. But it’s also very unpredictable as to when it shows up.

I’ve identified some food intolerances and so I avoid those and it got a little better. But a lot of people say ‘Oh, just don’t be stressed’ or ‘Get more sleep’. Even if I do those things, my IBS is still showing up.

Most days, my IBS isn’t an issue but then at least once a week it is. Sometimes more, depending on the month. Basically, the way IBS shows up in my life is it’ll just disrupt it inconveniently. Sometimes I’m working at home, so it’s not as bad to deal with. However, sometimes if I’m at work or on a trip, I don’t want to be too graphic, but I need to be near a bathroom.

For me, the way I somewhat manage my IBS is by avoiding certain foods. I also have prescription antispasmodics which basically slow your gut and calm it down. Those do help and I can take them preemptively if I’m worried about a certain workday or trip.

However, one of them really dries me out. It gives me a headache and sometimes a migraine if I don’t drink extra water. So I don’t love taking that, but it’s my best line of defence currently. You also have to be careful not to take antispasmodics too often, because I was told by my gastroenterologist that they can be less effective if you do.

Basically, the way IBS-D shows up is that it just disrupts your day at inconvenient times and you just have to deal with it because you have no other choice.

You’ve already mentioned that - to some degree - IBS might be related to Endometriosis. Are there any ways they influence each other in terms of your overall health?

I’m still figuring it out because when I do have an IBS flare up I often have pelvic pain or pain that comes on right before it happens. So I don’t really have a lot of notice, and I’m not sure if it’s related to the Endo or not. Because on the flip side, I have plenty of Endo pelvic pain flare-ups where I don’t have an IBS issue.

Generally, in terms of those things happening or working together, that can lead to more fatigue and it tires you out. It’s a lot wear and tear on your body. That’s when sometimes the mental health comes into play too, where you just feel like ‘this really sucks,’ ‘this is hard and overwhelming,’ and I don’t want to deal with it.

That's when sometimes the mental health comes into play too, where you just feel like ‘this really sucks,’ ‘this is hard and overwhelming,’ and I don't want to deal with it.

Are there any things you're doing that seem to help with both conditions?

Not necessarily.

It really varies depending on the person, so it’s more trial and error. Trying different things and seeing if it helps with lowering the amount of flare-ups per month. I started a medication called gabapentin when my pain was at its worst, and that seems to help both my Endo and IBS to an extent. But then I got COVID earlier this year and my IBS got worse again, so things can always change.

In general, I’ve made sure not to over-schedule or over-commit myself. I noticed one weekend when I did that, it got really bad. The basic recommendations of getting enough sleep, eating enough, and managing stress do help inadvertently.

One thing I did try recently is gut-directed hypnotherapy. You can do it with a specialist or in person, but I just use an app. Basically it’s hypnotherapy that is more focused on the gut, but it also acts as a nice, relaxing meditation too. So I try to do that every morning.

Another thing that helps is resting when I need to. I do notice that – because of brain fog – I’ll reach a point each day where I need to mentally and physically take a break.

So part of my workplace accommodation is having a private space to do a meditation (sitting or lying down) and closing my eyes for like 10 minutes. I noticed that helps with my energy levels.

It’s hard because with Endo pain and IBS it’s a delicate balance of not overdoing it with your body. But some form of movement is helpful because otherwise, my fatigue can get bad. So gentle movement like taking walks or low-intensity movement, in general, helps both my Endo and IBS.

I’m in the process of trying acupuncture to see if that helps, but it’s too soon to know yet.

What's the name of the app that you use for the gut-focused hypnotherapy?

Years ago, I tried one that my dietitian recommended called Nerva. However, it’s really expensive. I recently found one that’s run by this woman, Jayne Corner, called the Calm and Happy Gut app and it’s more financially feasible for me. There’s also some CBT exercises in the app and they’re helpful for managing your emotions or thoughts.

How’s Bearable helping you to manage Endometriosis and IBS?

I think it helped me differently when I first started using it, versus now when I have a better idea of my health conditions. In the beginning, I think it was helpful to see if there were any correlations. For example, if I did more exercise than usual, was I more likely to have days of IBS issues?

Seeing things like that was more helpful in the beginning. Compared to now, I have a better idea of the general things that seem to help or hurt me. So I don’t really use that as often.

For me now, I’d say it’s more helpful for making it easy to track things and – at a glance – see how things are going. For my own reference and also to prepare for medical appointments and things like that.

Do you have any other recommendations or resources that you want other people living with these Endo and IBS to know about?

It’s a little hard to find, but there are a few free Endo and pelvic pain support groups that exist that I found really helpful. If you search within Facebook groups or Reddit, r/endo or r/endometriosis, those can be really helpful. Especially if you have a new symptom showing up and you’re wondering if anyone else experienced the same thing. It can be helpful in advocating for yourself at the doctor’s office.

It’s hard because, from what I’ve been told about chronic pain, it’s like these neural pathways that have been established. Even with IBS, my dietitian has described that it’s like a hypersensitivity in a sense. So sometimes if I’m worried about my pain, or worried about my IBS flaring up, it can show up differently. Or I can have pain move to a different part of my body. That’s when I’m like ‘Oh no, is this something new that I should be concerned about?’ So in those moments, the support groups can be really helpful in feeling less alone. And if a new symptom lasts, then I’ll mention it to my doctor.

There’s one virtual, monthly pelvic pain support group that is through an app called Lasa Health, which was co-founded by a woman who also has chronic pelvic pain, Margaret Melville.

There’s also a therapist, Casey Berna, who has a monthly, virtual Endo support group and I found those to be really helpful.

Finding a good specialist for Endometriosis or IBS – which would be a gastroenterologist – can be hard sometimes. But if you can, like those are helpful.

I found a good pelvic pain and Endo specialist who has been really helpful for guiding me through the different things I can consider to try. Whether it’s medications, birth control, surgery, or alternative treatments like acupuncture.

Pelvic floor physical therapy is something that can be really helpful for some people and was somewhat helpful for me. There’s just so many options, honestly. So I think if you’re feeling overwhelmed, a good place to start is with a doctor you trust and gathering data from support groups to learn more about Endo and IBS.

We often hear that people struggle to find a good doctor. But have you had a fairly positive experience with your medical team?

So, oh boy. For the most part, I haven’t had good experiences, but now I have some that are good.

It’s really a journey, which can be frustrating. The average time for someone with Endo to even get a diagnosis is around eight years. For me, it was about three or four years. I got lucky with my primary care physician. They’ve always been someone who’s been very good at listening and validating my experiences.

With IBS, my experience and what I’ve heard from others is that it’s hard to find a good gastroenterologist. I’m actually about to see a third one later this year and I’m more hopeful that they will be helpful because I have friends and coworkers who have had positive experiences with that specific clinic.

With the first gastro’ I went to, she did try some things, but she didn’t really listen to me or communicate to me what fully she considered or tested me for. There was a time when she basically said, ‘I don’t think I can help you anymore, but you should get an MRI because you might have Endometriosis’. So I’m grateful for that at least.

Earlier this year, I saw a second gastroenterologist – who I waited six months to see. It’s sometimes hard with specialists, especially seeing a new one, because you’re condensing years of experience into a five-minute description. When I did that, he basically said that it sounded like my quality of life was good enough and that I should be fine. That was a pretty invalidating and not a great experience. That obviously led me to seeking out a third gastroenterologist.

I think another thing with chronic health conditions, which is beyond the question you asked, but that could be helpful for others is: don’t be afraid to seek a second opinion. With my Endo, the first OBGYN I saw was very kind, but she didn’t know enough about Endometriosis.

She put me on birth control which had the highest amount of estrogen. Which, with Endo, you don’t want because, ideally, you’re trying to reduce the estrogen. So that led to the worst pelvic pain of my life so far. I was in so much pain and she wasn’t giving me options for pain management.

That led me to seek another OBGYN. The second OBGYN was fantastic, knew a lot more about Endo, and took the time to listen and help me. That led to the referral for the pelvic pain and Endo specialist that I see now. So I would say generally my experience with doctors has been mostly negative but – after years – I’ve found some that are helpful. I’m still searching for the right gastroenterologist.

"I think another thing with chronic health conditions... that could be helpful for others is: don’t be afraid to seek a second opinion. "

Why do you think it’s so hard to find good Endo and IBS specialists?

Part of the reason Endometriosis is harder to diagnose is that, technically, it can only be officially diagnosed through laparoscopy (a minimally invasive surgery). It’s ridiculous that you need a surgery to diagnose it. I just got “lucky” that you could see some of it on an pelvic MRI.

Then with IBS, there’s no test for that either. It’s basically a diagnosis of exclusion, ruling out ulcerative colitis, IBD, and other things like that. Just making sure you meet certain criteria of frequency. But other than that, there’s no test for it.

I think that’s part of the reason it makes it hard to find a doctor who can really help. Also, because there’s no cure and the management techniques vary by person, it seems like the doctors are also kind of doing trial and error in a sense.

Do you have any recommendations for how to prep for a medical appointment with Bearable?

For me, the best way to prepare is by writing things down.

Basically, I’ll write down questions I want to ask and summarize what’s in Bearable and put it into a document. For example, how often my symptoms have shown up since I last saw my doctor.

It helps me to be a better advocate for myself in the appointment. Since a lot of times, I’ll go into the appointment and I’ll either be nervous or can’t think of the question I want to ask when I’m on the spot.

You mentioned that you're using support groups. It sounds as though that's quite a big part of your management process.

Yeah, I think it’s really helpful because sometimes you need that specific kind of support. Other people in my life can sympathize and be kind, but they can’t fully understand.

The reverse of that, is it also feels good to help others in the support groups too. Like hopefully accelerating the discovery process for them, or offering options of management techniques they can discuss with their doctor. That can feel very rewarding.

For me, having a purpose can be really helpful for dealing with chronic health conditions. Sometimes when you are in so much pain, you need something to keep you motivated or pull you out of the overwhelming feelings that come up. So I think that’s an important thing too.

Note. The names and information in this article have been used with the permission of the interviewee.

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Published 5th September 2024.

Flo lives with ADHD. ME/CFS, Gastrointestinal conditions and Eczema. In this article, we chat with Flo about how they manage their symptoms with pacing, avoiding triggers, and the habits that help to reduce flare-ups. Flo also discusses the difficulty of needing stimulation (ADHD) and rest (ME/CFS) and the problems this can cause day-to-day.

Just to get started do you mind walking me through the main health conditions that you're tracking and managing with Bearable?

The main thing I’m managing is ME/CFS. That’s been my main health problem for about 3 to 4 years. I also have some smaller problems, like I have eczema, I have some gastrointestinal problems. I also have ADHD – but I don’t really manage it with Bearable because I wouldn’t know how.

Going even further back, how was your health before you started using Bearable?

Very very bad. That was when my ME/CFS was the worst It had ever been. I don’t know exactly when I started using Bearable, but I think it was after I was diagnosed with ME/CFS.

I was basically bedbound at the time and couldn't do anything really.

Was that the reason you started using Bearable?

Yes, I really didn’t know at the time what affected my symptoms or what helped. That was the main reason I started to use Bearable, to find out how I could improve my symptoms.

Did Bearable help you to identify triggers and helpful self-management strategies?

Yes. Later on, a little less. But, I have to say Bearable was good for finding the big-picture triggers. It helped me to get a rough idea of where the big pain points were in my behaviour. For example, which of my habits caused my symptom severity to increase later on.

I found it hard to use it as a fine-grained tool. Specifically, to find which foods improve or worsen my symptoms. I wanted to enter very specific amounts of ingredients which wasn’t possible. BUT yes at the beginning, it was very helpful to find out what caused the most trouble with my ME/CFS.

Did Bearable also have any impact on your overall quality of life or your well-being?

Yes, of course. Because I could avoid the things I had identified as triggers in Bearable, that made my overall well-being better.

Before we discuss ADHD and ME/CFS specifically, is there anything else you’d like to add?

Something else that Bearable helped me with more generally was that it made it easier to show the status of my condition to my doctors. Being able to show them the charts or the most prevalent symptoms. That made it easier to communicate with my doctors.

One other thing is that what I use the most at the moment is the weekly report feature. It just helps me to see the general direction of where things are going with my health week-by-week. To see if I have to change what I’m doing this week or even stop what I’m doing. Kind of like an early warning system.

Tell me about your day-to-day experience with ADHD.

I have to say I had my ADHD fairly under control before ME/CFS. Over the years, I have learned how to work with it. For example, I left my normal 9 to 5 job to do freelancing, which was better for my ADHD. So it didn’t affect me that much before ME/CFS but when ME/CFS hit me, it caused some problems.

The one thing is that it’s made Pacing very hard. Pacing is the only thing that really helps me with my ME/CFS condition. But because of my ADHD, it’s very very hard for me not to do anything and to just rest.

I always want to do things. I have so many ideas about what I want to do and I just need stimulation constantly. That makes Pacing very hard.

The other thing that’s hard about ADHD is that I sometimes get this kind of hyper-focus. Where I’m just so into a task that I can’t stop it and I forget everything else around me and forget to take breaks. I’ll even forget to stop when I’m feeling the first symptoms (of ME/CFS) coming and this can lead to a crash.

Because of ADHD, I have always struggled with starting boring tasks or tasks that seem overwhelming (note. This is sometimes referred to as Task Paralysis). These tasks often stress me out and – with ME/CFS – high stress causes my symptoms to flare up.

For example, when I force myself to do these tasks despite task paralysis, I get symptoms much sooner. Especially compared with doing the stuff that I enjoy doing, the stuff that doesn’t stress me out. That makes managing ME/CFS and ADHD hard because I get brain fog and can’t complete tasks.

In general, the very limited energy I have due to ME/CFS makes it nearly impossible to do the things I need to do, let alone the things that I want to do.

Another trait of my ADHD is a lack of self-control. That was always a problem for me. I also had some alcohol abuse history and I think this has to do with my ADHD. Now with the ME/CFS this means I also lack self-control when I’m doing things that I know will cause me to crash later on. Or that will make my sleep worse and – in turn – makes crashing more likely too.

For example, with food, I know stuff that I shouldn’t eat if I want to sleep well. But I do it anyway because it’s very hard for me to control that because of ADHD.

In some ways, Chronic Fatigue and ADHD seem almost like Polar Opposites of one another. Managing one condition forces you to trigger the other condition. That must be incredibly frustrating.

That’s a very good way to say it, yes.

I also have very irregular sleep patterns because of ADHD and – combined with ME/CFS where sleep is not refreshing – I often have to sleep during the daytime. So these conditions really have an impact on each other.

I also can’t really do sport. Sport helped me very much with my ADHD (and other conditions) and it made everything a bit better. Now I can’t do sports anymore because doing it causes me to crash almost instantly (note: This is often referred to as post-exertion malaise or PEM).

The only thing I can do is a little bit of restorative yoga. It helps a bit but it doesn’t help me with ADHD to the same extent as the weightlifting or jogging that I used to do.

Do you mind telling me a little bit more about kind of your day-to-day life with chronic fatigue as well?

At the moment, I would say my symptoms are moderate to mild. This is because I currently have the opportunity to not do so much. My wife is very caring and my parents also support me at the moment.

My day-to-day life is that I sleep as long as I can. I often wake up way too early and with way too little sleep. Then I start planning my day look into my getting things done system and start doing the things I have to do. I do that until I can’t anymore and that’s about one to two hours a day.

You mentioned that you were using pacing for chronic fatigue?

Yes. That’s the most important part of my management of ME/CFS. I do pacing mainly by using a Garmin watch and by monitoring my heart rate. When I do anything, I make sure that it doesn’t cause my heart rate over 106 beats per minute. When my symptoms are more severe, the limit is 90 beats per minute. I think that’s what has helped my ME/CFS to become moderate.

Is there anything that is helping you to manage both CFS and ADHD?

I don’t know if this counts as a treatment but I bought a steam deck for gaming because that’s an activity I can do lying down and that satisfies my need to do something with my ADHD. It also helps a bit with pacing because it enables me to lie down and to be less active.

That’s awesome, what games are you playing at the moment?

At the moment, because my symptoms are only moderate, I’m playing more on my desktop but the last thing I played on the Steam deck was Vampire Survivors. It doesn’t take a lot of energy but it also keeps me stimulated which is good for my ADHD.

I have some other some other self-management habits as well.

I do restorative yoga with the DownDog app because that satisfies my ADHD. I started with trying yoga videos on YouTube but that was mostly almost always the same stuff over and over again which wasn’t good for my ADHD.

DownDog is great because it changes up the practice each time and that works really well for my ADHD. You can also set how long you want the session to last according to how feel that day. I’m really happy with it and I think it helped me to stay as active as possible with my chronic fatigue condition. That’s basically the only physical activity I can do.

The other thing that helped is yoga nidra. That’s another conflict between Pacing and ADHD. I can’t just lie down and do nothing, that’s basically impossible for me to do. It was only possible when my CFS was at its worst because then I couldn’t even play games or listen to something. All I could do was just lie down and do nothing because it was physically impossible to do anything.

Now that my ME/CFS symptoms are moderate, I always need some stimulus.

Yoga Nidra provides that by giving a guided meditation and it also just really relaxes me like nothing else. I tried normal meditation but that didn't work as well.

How many of these things were suggested by a medical practitioner?

Pacing was the only thing mentioned by a medical practitioner and drugs, of course.

At the moment I’m only taking a prescription medication for my sleep issues and that’s having a positive impact. I think it helps with my sleep. At the beginning really helped me sleep but since then I’ve also had times when my sleep was horrible regardless. So I’m just taking it because I’m afraid of how my sleep will be if I stop taking it.

I also took another medication for a year and a half but it stopped working after a while and my doctor and I decided I should come off of it. They’ve recommended other medications since then but I have to admit I’m a little scared of drugs that can have side effects.

I’ve read that some of the ADHD medications can make your symptoms worse if you have ME/CFS. So because my ME/CFS symptoms are moderate at the moment, it’s not worth the risk.

Before we wrap things up is there anything else you’d like to recommend to people living with ME/CFS and ADHD?

Another treatment that really helped me – even before my ME/CFS diagnosis – was Stoicism. It helped me cope. It helped me not get depressed or angry or whatever. Even when my symptoms were at their worst, my wife told me that I was coping better with the illness than she did at the time.

I think that was because stoicism made me see my illness from another point of view. It helped me to come to terms with my ADHD and ME/CFS because I can’t really change the fact that I live with them. So I have to accept them and act within those boundaries from now on.

Note. The names and information in this article have been used with the permission of the interviewee.

Veronica | Headaches, Lymphedema, and Depression

Jennifer | Migraines, ADHD, MCAS, Ehlers-Danlos syndrome, Anxiety, Depression, and Intestinal tract issues.

How I manage ADHD, MCAS, and EDS Interview & article by Jesse Driessen.Published 29th May 2024. Jennifer lives with ADHD, Mast Cell Activation Syndrome (MCAS),

Laura | Long Covid

How Laura uses Bearable to manage Long Covid. I started using Bearable because I have had long covid for two years now. In the beginning

How I manage Lymphedema, Headaches, Anxiety, and Depression

Interview & article by Jesse Driessen.
Published 23rd July 2024.

Veronica lives with Lymphedema, Headaches, Insomnia, Anxiety, and Depression. Recently, we reached out to chat about how Bearable is helping her to manage her symptoms, find helpful correlations, and feel more in control of her health.

How long have you been using Bearable and are there any specific health conditions that you're tracking or managing with Bearable?

Well, I checked my Google Play subscriptions before this and it’s been almost exactly a year since I subscribed. So I think I started using it a little bit before then. I kind of try to track everything with Bearable.

I’ve used a ton of different apps for health, self-help, and mental health. I use it primarily for tracking mental health. I track depression anxiety potential triggers for those, sleep, and insomnia. I have a lot of GI issues – probably related to anxiety – so I track those too.

I have a lot that I try to work on in Bearable.

If we go back to before you were using Bearable, how was your Health at that point in time?

My health before always sucked. It just kind of sucks all around and I don’t expect an app to change that. I feel like using Bearable, I have a better idea of how, why, and in which ways my health sucks.

Sometimes I learn there are things I can do differently to change that suckage and so I do feel Bearable is helpful. Even though it’s not a miracle app or a miracle pill, It helps me manage what I’m doing and what could be affecting the symptoms of my existing conditions.

It also helps me pay attention when there are new side effects or symptoms that pop up and it helps me track, for example; I only got three hours of sleep last night but Bearable reminds me that I also had two energy shots yesterday and that maybe there’s a connection there.

...using Bearable, I have a better idea of how, why, and in which ways my health sucks.

Was there anything specific that happened that made you look for an app like Bearable?

I think I was recommended to try Bearable by someone in a Facebook group. I think it might have been an ADHD group for women. Or maybe from a mental health article I read.

When I downloaded it, at first I was a little overwhelmed. I do feel like I’m kind of lazy with my phone. I feel like there’s a lot more I could do with Bearable if I took the time to set it up to be exactly what I want it to be. To learn everything it could do with it. But right now, I have a lot in there already.

What would you say is the main outcome you've had from using Bearable?

I think it’s helped me pay more attention to myself. Before Bearable, I was just kind of like “I feel like crap”. Now I’m like “I feel like crap, this is how I feel like crap, this is why I feel like crap”.

I try to make those connections. I try to use better words to describe how I’m feeling and to get a handle on exactly what I’m feeling. And to potentially find out what could have caused me to feel like crap.

Earlier, you mentioned tracking triggers. Have you found that identifying potential causes for flare-ups has had an impact on your well-being or day-to-day life?

Yes, so I noticed that I wasn’t drinking enough water. I thought I was drinking enough because I have this giant flask of water – and I fill it with ice more than I fill it with water – but I just wasn’t drinking enough.

When I sat and tried to track how much water I was actually drinking, I quickly realized that I wasn’t drinking enough and it was contributing to my migraine headaches. So I was able to reduce the amount of times a week I need to take my emergency migraine medicine by improving my hydration.

Of course that doesn’t work 100% of the time to get rid of them, but it has reduced my headache overall, which is great.

I also have a combination of Lipedema and Lymphedema. Bearable helped me discover that my symptoms are more related to Sugar than Salt – which was surprising. Usually, you hear that salt increases swelling. But I started to notice that on days when I had a moderate amount of sugar, I also had more severe swelling. In Bearable, it was just a clear pattern.

I had no idea that Sugar could cause cholesterol like that but it kind of makes sense. Because it’s a fatty deposit and because sugar feeds inflammation. I knew that before but I didn’t want to admit it. I tried to ignore that I was like “No, sugar makes me feel good.”

So paying attention to my salt and sugar levels in Bearable, I’m able to to reduce some of my swelling. Not all of it, it's got a mind of its own, and it does what it wants - but it definitely does help.

We often hear from Bearable members that they’ll speak with their doctor about their insights. Is that something that you've used Bearable for yourself?

I avoided going to the doctor for a while. Over the past 12 months, there was a period where I avoided going to the doctor. I was trying to take care of my cats before myself and I just didn’t have time to go to the doctor.

But, in general, I see so many doctors. I’m actually wearing a heart monitor right now. It’s this weird one that is taped on with a button on it. You have to leave it on for two weeks and then I have to take it off and put it in a box and mail it. Then put on a second one for another two weeks. It’s just collecting data.

They didn’t tell me how much insurance is going to cover it. They said “We’ll figure that out after we process the data” and I was like “No, you’re supposed to do that before you do anything”. They didn’t even tell me they were putting it on until they were putting it on me. I didn’t even have a chance to say no.

So, I see a lot of doctors and it’s hard to keep track of everything I’ve communicated with them. When I do see them, it’s not always a positive experience.

Right now, my cardiologist is trying to change my medication. I’ll definitely be paying attention to the side effects in Bearable because I’m worried about them. So I’ll definitely be putting them in there.

They didn't even tell me they were putting it on until they were putting it on me. I didn't even have a chance to say no.

We hear from lots of Bearable members that they feel more in control of their health or - have a better understanding of their health - after using the app. Have you had a similar experience?

Yes, I think so. I feel less passive. My health isn’t something that just happens to me anymore. It’s something that I have more control over now.

Being able to pay attention to the things that I do. Pay attention to the things that happen to me. Pay attention to the things that I feel throughout the day. To see the connections between things that happen and my health. To look back over time and make choices based on the data I’ve collected.

It makes me feel more in control because I DO have a say in how I feel. I can make these changes that positively impact my health.

My health isn’t something that just happens to me anymore. It’s something that I have more control over now.

I think it’s fairly common to feel like most of the advice for managing symptoms is very generic or not very personalised. For example, eat better, hydrate better, get more time outdoors. Has that been your experience too?

It’s hard to do dietary changes. It takes so much work to cook healthy meals and a lot of money most of the time too. Especially, If you don’t have the physical or mental ability to stand at your kitchen counter cutting vegetables and cooking for like an hour.

People say “Eat vegetables” or “Eat healthy” and it’s like “Well do you want to come over here and make it for me!?”

There are also a lot of people who live in food deserts here. There’s literally nowhere to buy produce for like 20 miles. That makes you feel even more isolated too.

Is there anything that you would like to add? Or any advice you have for maybe somebody thinking about using Bearable?

I’m not normally a ‘charts, numbers, and data’ type of person but I really appreciate how Bearable makes things visual for me. It shows me correlations between things like the weather, fatigue, and headaches! That is a huge part of it, especially considering where I live (Oklahoma).

I think some people might be put off or intimidated by the idea of something that tracks all this data or that is so numbers-based. But it’s not really, it’s very visual. I think anyone who has thought of trying Bearable but might be put off by these things, should just try the free version first. Just give it a shot.

There’s a lot you can do with a free version without even having to subscribe. There’s a lot you can do with the subscription too but there’s just so much you can do with this app.

I wish I was more disciplined with using it but when I do use Bearable consistently, every day, it pays off immediately. I’m really glad I got it.

If anyone's on the fence they should definitely just try Bearable.

Note. The names and information in this article have been used with the permission of the interviewee.

Robyn | Fibromyalgia & Chronic Pain

How Robyn manages Fibromyalgia & Chronic Pain with Bearable I started using Bearable because someone told me about it several years ago, so I thought I’d

Rae | Mental Health & ADHD

How Rae manages Mental Health & ADHD with Bearable. I started using Bearable because my mental health was tanking as a uni student during COVID lockdowns.

Laura | Long Covid

How Laura uses Bearable to manage Long Covid. I started using Bearable because I have had long covid for two years now. In the beginning

Bearable Review - Dysautonomia, Anxiety & Depression

How I manage Dysautonomia, PoTS, Mastocytosis, Anxiety, and Depression

Interview & article by Jesse Driessen.
Published 7th June 2024.

Kayleigh lives with Dysautonomia, Postural tachycardia syndrome (PoTS), Mastocytosis, Anxiety, and Depression. We spoke with her over Zoom to find out how Bearable is helping her to manage her symptoms, aid with the diagnosis process, and come to terms with changes in her life.

Just to kick things off; do you want to let me know how long you’ve been using Bearable and then also the different health conditions that you’re managing with been Bearable as well

Yeah, I’ve been using Bearable for about three months. I have Mastocytosis and Dysautonomia and depression and anxiety as well. Mastocytosis is when your body produces too many Mast cells and it affects my whole system, my organs, everything. It can be very mild or severe and I’m somewhere in the middle. It’s moderate.

Dysautonomia is an umbrella term for lots of conditions. I have PoTS as well, which is also a form of Dysautonomia. Your heart and brain struggle to communicate properly about changes in blood pressure when you stand up or sit down or lay down.

I use the term Dysautonomia because Mastocytosis also falls under Dysautonomia and I have some chest pain from the two conditions. It's a little complicated but that's what I have.

That makes sense, thanks for explaining. Would you say there are specific symptoms of those conditions that are more severe?

Yeah totally. Lots and lots of fatigue. I’m always tired. I take lots of naps and when I wake up I don’t feel rested. Stomach issues, digestion issues, nausea, acid reflux. The abdominal pain is the worst though.

Oh Mastocytosis – I’m sorry I forgot to mention this – it comes with anaphylactic allergic reactions and you don’t really know what triggers them. So that is definitely a challenge. I have two epipens on me at all times because – whilst I have an idea of what my triggers might be – who knows if it could be something random one day. That’s just that’s probably the most severe and worrying symptom I guess.

You’ve been using Bearable for about three months. Do you want to tell me how your health was – or how you were managing your health – before you were using Bearable?

I was using the health app on my phone and I was really only using it to track all my medications but it was not doing much because you can’t. There’s not many things you can like put in there. If you want to track your symptoms it’s kind of complicated and not good for in-depth tracking at all. So I wasn’t really tracking much. I would sometimes write things down in my notes but that’s not a very reliable system either.

Then I saw the ad for Bearable and I thought “Wow, this looks definitely like something that would help”. I downloaded it and I started using it every day and now I actually have something to show to my doctors and the health professionals that help me. I can show them how I’m feeling based using Bearable. How my symptoms change and the things that seem to affect my symptoms. It’s so great that you can track the weather in Bearable too, that’s awesome.

Honestly the best thing about Bearable is just being able to track my symptoms. Being able to track it in-depth and have something to show somebody who needs to know. It totally helped me get control of and find ways to manage my health.

The topic of native or generic health apps is interesting. For so long it felt like they were designed just for people who are already healthy. They’re not really apps for people with illnesses or health conditions.

Apple Health has introduced some sort of mental health and symptom tracking but I still get the impression it’s not really designed for people with complex health issues. It’s definitely problematic. So I’m glad to hear that Bearable is filling that gap and addressing that need.

Is there anything else you’d like to tell me about how bearable has helped you to prepare for doctors or medical appointments?

I don’t have Bearable Premium but it still works fantastically without a subscription – like looking at weekly and monthly trends in symptom severity scores. I don’t know what the chart is called but it’s fantastic.

I’ve actually shown it to my doctor – one of my specialists – and even she thinks it’s fantastic too because it’s very hard to collect that much symptom data yourself (without an app). So it really helps me actually know what I’m going to talk about (in an appointment).

When I go to doctors I struggle with remembering everything I need to say to them. Actually being able to talk about my concerns and having the option of showing them my progress or my feelings [in Bearable]. It helps me prepare for sure.

It’s good to hear that they’re receptive to seeing reports because I’ve heard from other members of the community – who’ve attempted to show reports to their doctors – and sometimes they’re just not interested at all. So I’m just glad you’re working with medical professionals who want to look at your symptom data – that’s definitely positive.

If you had to pick one thing that Bearable helped you with the most, what would you say that is?

Well – in my opinion – it helped me get diagnosed with PoTS and Dysautonomia because I didn’t really even know about Dysautonomia. Then, I was talking to a friend who has it. I was showing her the app, showing her my symptoms and my heart rate. She’s like “this is really high, like chronically high and – you know – like how it is for PoTS.” That definitely helped me a lot.

I went to a physiotherapist to do a tilt table test and – because I went on a really good day my heart rate wasn’t as severe as normal – I showed him my heart rate readings in Bearable (to help him understand how severe they are on bad days).

Outside of experiences with medical professionals, has Bearable had any sort of impact on how you manage your health or even just feel about your health?

Yeah, definitely. I feel more in control. Honestly, like I have a way to actually put it all down and actually track my symptoms and see the correlations.

Also because I’m quite new to having a chronic illness. It’s only been about six months. Knowing that there are people out there who also have experienced something like I have and that they also use this app.

If I need to reach out to someone, the community is there. Because Bearable’s designed specifically for chronically ill people - which is amazing because most things aren't - it gives me peace of mind that I'm not alone in this.

I’m really happy to hear that. That’s one of the things we want to try to do even more with. We have a Discord community and a Reddit community but we definitely want to connect people in the community because some of the support that’s available is amazing.

One of our favourite things – as a team at Bearable – is seeing people within the community just helping each other on tough days, giving a bit of advice, and just supporting one another.

Has Bearable helped you to find any useful – or even unexpected – triggers?

Yeah the weather! I had no idea (how much it impacted my health) and it totally changed how I see my symptoms and even my mental health too.

Of course, I knew people can have a change in mental health with the weather but I didn’t really even think about how it might affect me at all. Then I started looking at it and I’m like “wow it’s cloudy today and I have a lower mental health rating than when it was sunny”. That really helped. With my symptoms – especially the fatigue and dizziness – the weather tracking has really been a game-changer for sure.

Food tracking is really good because I’ve discovered that some food products that contain gluten trigger some symptoms for my stomach. I wouldn’t even have thought about that because I got tested for celiac disease and I did not have that. So I totally didn’t think that it would be a factor impacting my health.

That seems to be quite a lot of people’s aim when they initially use the app. They want to sort through the minefield of everything that could be causing issues and start connecting the dots.

Would you say there’s anything else that you maybe want to touch on that Bearable’s helped with?

So, before – like way before – all of this started, I did Ukrainian dance. I was dancing four times a week and was really healthy. All of a sudden all this happened (with my health) and I had to quit. It was honestly devastating. I had a dream to be in this very specific ensemble that I had been dancing under for my whole life. I got there and I did my first performance and it was probably one of the best days of my life. Then a few months later this all happened and I had to quit. It was very sad for me.

I had a lot more mental health issues than I’d had previously. I’ve had Anxiety and Depression for a few years but it kind of all came back because I couldn’t let my feelings out through physical activity. I just couldn’t do much physical activity anymore because of the symptoms I was experiencing. So there wasn’t any way that I could let it out.

The mood tracking tools in Bearable totally helped me realise that this was not not good for me. I mean – I knew it wasn’t good – but it was not good mentally and then my mood rating for the day was slowly declining and all my symptoms were quite severe. Mental health totally has a correlation with your (physical) health as well. Even if you have a chronic illness or not. I found that if I was having a bad mental health day, I was probably also having a bad physical health day with my symptoms too.

That helped me because one of my doctor's is very supportive with my mental health. She helped me get some new medication and bring me back up to a good place mentally. I showed her the mental health correlation with my physical symptoms. So Bearable helped me to get a clearer picture of what's going on (with my mental and physical health).

Related to your own experiences as a dancer; a lot of the members of the community I speak to have their lives derailed by chronic illness.

Recently, I was speaking to somebody who was on the track to being an Olympic Athlete – a long distance runner – and she started suffering with ME/CFS basically and it just completely changed her entire existence.

Having to give up on a dream and completely readjust who you are just because you have this condition – that can’t necessarily be diagnosed or treated – it really sucks. I’m really sorry that you had that experience.

It sounds like maybe you’ve come to terms with it a little. Or that you’re making progress with it. Is that a fair assumption?

The decision to quit was so, so hard but now I definitely know that it was for the best. There’s a chance I can maybe go back – we’ll see – but that’s not that’s not something I need to worry about right now. But yeah, I’ve come to terms with it.

Do you have any advice for other people who live with your unique mix of chronic health conditions? Or maybe for anybody who’s thinking about using Bearable?

Well, for me, Bearable totally changed my health journey and how I track it all. Honestly, even if people don’t have a chronic illness I think it would be great to use. Just because everyone has a headache once in a while or stomach ache once in a while.

Even if it’s not something to worry about, I think it’s nice to track it at least. Because, if it becomes something that needs to be addressed, it’s nice to have that pre-information. When I had to start this journey I had nothing to show (my doctor). All I could tell them was “my stomach hurts” there was nothing for them to go off of.

It’s good to track your mood whether it’s unbearable – or something else – even if you don’t have a mental illness or anything like that, it’s just very good to track mental health always.

For people who might have something like I have – of course every case is different – it’s definitely a game changer for my health. I have something to show medical professionals. I have peace of mind for myself. I’m more in control and I’m starting to learn what my triggers are. Or how I feel day-to-day. Yeah it’s totally worth it.

Like I said before, I use the free version of Bearable and it's so good even without a subscription. I've been considering purchasing it but even without Bearable Premium, it's so helpful. It's such a great tool and definitely something that I would recommend to everyone, chronic illness or not.

It’s actually really nice to hear that you’re getting value and getting some use out of Bearable even without having to pay anything for it. That’s how we designed it. We wanted it to be useful without having to pay money. Tons of people with chronic health conditions have limited income because of their health. That’s why they’ll always be a free version of the app.

You’ve mentioned feeling a bit more in control since using Bearable and you’ve also mentioned having a clearer view of certain things – mood trends, triggers, etc. Is there anything else you’d like to add?

Honestly just having a consistent way to track my symptoms is so helpful. Before I was trying to write it down in my notes app. Or write it down on a piece of paper – and that’s that’s okay – but for me, it was really hard to be consistent. Or to do it at certain times of day.

With Bearable it’s good because I can do it twice a day-ish and (the mid morning and evening). So it’s always tracking how I’m feeling at that time every single day. It’s so much easier. I can look at my progress and seeing what medication is helping or if a specific physio plan is helping. My good days and bad days.

I’m still in school, so it’s even nice to show my principal because she’ll talk to me about “missing lots and lots of school” because of my health and (before Bearable) I had nothing to show her. There was no diagnosis and I finally showed her Bearable one day and I’m like “Look at all this (severe symptom data). I’m not lying. I’m not just skipping school.”

It's just nice to actually have something physical to represent how I'm feeling and how my health changes.

I always feel so frustrated that it’s necessary to show somebody an illustration of how you’re feeling, that they wouldn’t just take your word for it. But I am glad that you have a principal who was – like your doctors – willing to look at your data and say “This person isn’t lying to me. They’re dealing with real and severe health conditions.” That’s reassuring.

Is there anything else – other than Bearable – that you’d like to suggest to people? Any other apps, other resources, anything else you’d recommend to people who’re about to go on the journey that you’ve been on with your health?

One app that I used to use quite often is called How we feel. It’s specifically to track your emotions and how you’re feeling throughout the day. If that’s what someone is looking for, that’s totally what I recommend and you don’t need to pay for it either.

I love apps like that. You don’t have to pay, or you have the choice to pay, and it just upgrades your experience like you can still use it very well without paying. I’m back to Bearable now but that’s another thing that I totally love about it because the subscription is optional. I know you mentioned that’s what you guys wanted to do and you totally totally hit the mark.

We’ve got about five minutes left, is there anything else that we haven’t touched on?

I’ve said it before but it’s 100% worth it to take five minutes a day – or five minutes twice a day – to log your symptoms. You can choose what you want to track and you can hide things you don’t want to track. There’s so many choices. The experiments too. I tried one, the vegan one I think. It was really cool because – I’m not a vegetarian or vegan but – it was really interesting to see how that way of eating impacted my health.

Note. The names and images used in this article have been used with the permission of the interviewee.

Robyn | Fibromyalgia & Chronic Pain

How Robyn manages Fibromyalgia & Chronic Pain with Bearable I started using Bearable because someone told me about it several years ago, so I thought I’d

Rae | Mental Health & ADHD

How Rae manages Mental Health & ADHD with Bearable. I started using Bearable because my mental health was tanking as a uni student during COVID lockdowns.

Laura | Long Covid

How Laura uses Bearable to manage Long Covid. I started using Bearable because I have had long covid for two years now. In the beginning

How I manage ADHD, MCAS, and EDS

Interview & article by Jesse Driessen.
Published 29th May 2024.

Jennifer lives with ADHD, Mast Cell Activation Syndrome (MCAS), Ehlers-Danlos syndrome, Anxiety, Depression, Migraine, Chronic Pain, and Gastro Intestinal tract problems. We spoke with her over Zoom to find out how Bearable is helping her to manage her symptoms, aid with the diagnosis process, and teaching her to be kinder to herself.

Do you want to tell me how long you’ve been using Bearable and any specific health conditions you’re tracking in Bearable as well?

Yes, I’ve been using Bearable since mid-February and I have kind of a lot of stuff going on. I have migraines that I got diagnosed with a few years ago. I’ve had intestinal tract problems since childhood – I can actually not remember a time that my stomach didn’t hurt – and it was pretty normal for me to always have problems in that area.

I’m late-diagnosed ADHD. I got my diagnosis this year (2024) and it explained a lot for me because I have severe time blindness. I also have Depression and Anxiety and probably Ehlers Danlos syndrome and Mast Cell Activation Syndrome (MCAS) but I’m I’m going for that diagnosis right now – with the help of Bearable.

What was the thing that happened that made you want to use Bearable and how was your health generally beforehand?

Because of my ADHD and time blindness, it was like swimming in a sea of uncertainty. I know I have symptoms today and maybe I know I had them yesterday but I can’t see the bigger picture.

For example, If I’m in pain I can’t see I’ve had severe pain symptoms for two weeks and that maybe I should go to the doctor. It’s usually my boyfriend who’s like “yeah you have severe heartburn for two weeks you should go to the doctor” and so it was very overwhelming.

[Because of ADHD time-blindness] I just don’t know what’s happening in my body and I don’t have a very good connection with my body. I also don’t feel hunger – I just feel pain in the stomach. It’s like I’m going “I’m not hungry I’m not hungry” and then suddenly there’s pain and that’s how I know I have to eat now.

I tried symptom tracking a few times before, like for my migraines. I had to check them - for the doctor - to get some kind of treatment. They always ask “how many days in the month did you have migraine symptoms?” so you can get this or that treatment. But it was very hard for me to do that before Bearable.

You’ve hinted at a few things that Bearable has helped you with – but what would you say is the main thing that Bearable has been useful for?

The biggest part for me is being able to see what my body’s doing, listening to it, and being able to visualise what’s going on for more than just two days. Being able to look at the whole month or like the whole week [of symptom severity data] and giving myself grace because of that.

Usually I was like ‘I don’t get stuff done. I’m so dumb. I’m so lazy’ and then now I look at my symptoms and I think ‘well everything’s red – of course I don’t get stuff done!’ That’s the biggest thing for me.

I think it’s so easy to compare yourself to people who don’t have a chronic illness or ADHD and feel like you have to try to maintain that same standard.

The reality is that most people with chronic health issues are exhausted from dealing with symptoms that make it impossible to live up to these standards. So I’m glad to hear that we’ve helped to give you some perspective on this.

How would you say that Bearable has impacted your day-to-day life or your overall well-being?

Well my day-to-day awareness (of symptom severity) went up. I’m not taking supplements twice anymore because – yesterday I was like ‘I have to take my magnesium’ and I went to open the app and saw that I already took it two hours ago. So that helps. Also, giving myself grace when I experience a symptom, especially one that’s new for me or feels new for me.

The daily reminders and goals help. I added the daily Healthcare goal ‘Don’t eat late meals’ and ‘No soda in the evening’ because usually I drank a lot of sparkling water and I realised that’s not good [for me]. That helped me to remember that if I want [soda] to do it before the evening and to remember to cook at a certain time. I also set a reminder for that goal so it tells me ‘you should maybe get to cooking and deciding what to eat’. That helped me very much.

When I began using the app I explored the ‘No screens one hour before bedtime’ experiment and I realised I suddenly had like an hour to myself! The first time I did the experiment I was just lying on my bed and staring at the wall and was like ‘What am I doing with my time? What should I do now?’ Then I started to use the time for me and that was really good. I wouldn’t have made that change without the app. It was like a little challenge and I’m a sucker for challenges.

Bearable also helps with finding correlations. My doctor has always said “you have to do cardio it helps with your migraines – you should really do cardio” and I’m like “I hate sport because I hate the feeling of sweat on my skin”. I got an indoor bike and I was tracking the effect of the indoor bike on my migraine symptoms and it doesn’t do anything. It’s good for my legs and my general health – but it’s not like it suddenly makes my migraines go away. The next time my doctor asks “are you doing enough cardio” I can say “yeah, but it’s not helping and I can show you that it’s not working [with Bearable]”.

It also helps me to differentiate between symptoms like with ADHD task paralysis; where you want to do something but you can’t decide what you want to do so you do basically nothing. I just discovered that [about myself]. I thought I was just lazy but I realised it’s just that my brain doesn’t brain in these moments.

I can also identify when I’m procrastinating. Like, am I cleaning even though I have to do my thesis work? Or am I just doing nothing and feeling really bad – which is task paralysis. That helps me like to get perspective on what’s actually going on and identify what the actual problem is, right now.

When I realise I’m in paralysis – the problem is you can’t decide what to do but – because I have this rule for myself; If I experience a really big symptom I record it in the app right away because otherwise I forget.

I know I can always open the app and check ‘paralysis = severe’. That way, I’ve already immediately done something and sometimes that helps break the paralysis. I’m able to say ‘okay at least I did something’.

You mentioned that you’ve been diagnosed with ADHD fairly recently. How has that diagnosis impacted your day-to-day life? Has it had a positive impact knowing that there’s a kind of a reason for your symptoms?

Yeah – the ADHD diagnosis – it had a very big impact. I understand more. I can research tips and tricks. Most importantly I do less negative self-talk. I still catch myself doing it every so often but it’s much less frequent now.

Picking what to eat is so difficult for me and eating in general. One day I really like this food but the next day I can’t eat anything – I can’t force myself to eat. If someone says “one more bite” I’m going to vomit if they try to make me eat it. Even if I’m incredibly hungry, I can’t force myself and I’d prefer to be hungry. Because of this, I have to really pressure myself to still eat because of my Migraine. It makes the headache worse when you don’t eat regularly so it’s really difficult for me. But it helps to know it’s because of ADHD and it’s not that I’m a broken person. It’s just that my brain works that way.

Sometimes I can trick myself to do some things because I know an ADHD trick or something. So I’m just a bit kinder to myself – a bit more forgiving.

With my friends and family and my boyfriend; when I say ‘maybe I don’t write back because if I don’t see things I forget things’ or ‘if I don’t see you I might forget that you exist but I still love you very much’ or ‘if I see something that reminds me of you I’m thinking of you’ and ‘I love that person but if I don’t hear anything [from you] you don’t exist’.

It helps when – if you have something important to tell me in WhatsApp – write ‘IMPORTANT’ at the start of the message so that when I scroll through I know that I have to answer that message.

Things like that [help me to advocate for myself better].

You mentioned speaking to a Doctor about the impact of cardio on your Migraine symptoms. Have you used Bearable in an appointment with a doctor and have you found that helpful?

Yes. I used Bearable in an appointment with my everyday doctor. I’ve been seeing this Doctor since I changed from my children’s paediatrician doctor – I’m 28 now – so he knows me very well. He knows I have stomach issues and all these things but I had an appointment to have my vitamin D levels checked and I decided ‘I’m prepping for this’ and – I had like two weeks of heartburn before that so I wanted to show him [using Bearable’s reports].

So I printed all the statistics; the average symptom severity score for all my symptoms, my stomach pain score, my heartburn severity score. I’m showing him my pain levels and I’m explaining how it works. I was like “these things are happening in my body every day. I don’t have a single day without pain! I want to do something about it.”

He was said “I want to test for Mast Cell Activation Syndrome but I don’t know if you can test it with blood. It might be a lot of work and a lot of forms” and then he looked like at the statistics and I looked at him and he said “maybe it doesn’t hurt [to put in the work to do the tests]” and so Bearable helped me very much to get this thing tested.

Unfortunately, at my next appointment – when we discussed the blood work – I didn’t have my Bearable reports with me. When he asked me questions about my recent symptoms, I didn’t have the answers with me. I just wish I had the statistics with me because in the end the Doctor didn’t make a plan for me – there was no clear outcome from the appointment. But I will make another doctor’s visit and I will bring everything with me.

When a woman says ‘I have pain every day’, Doctors tend to think ‘She probably just has pain once a week and she’s exaggerating’.

But if you have statistics and can say ‘I track my pain levels every day’ they can’t as easily dismiss you as being a sensitive female. So I really like the insights in Bearable. They help you to battle the negative stereotypes and fight back.

Do you have any advice for somebody who’s thinking about using an app like Bearable?

The thing that was most important to me – that I would also advise to others – is look if your data is safe because that was my biggest concern. When I learned Bearable is made by people with chronic illness and you won’t sell my data – that was so important for me. That was when I knew I wanted to download it and test it. So that’s the very first important thing.

Also, you should check to see if there’s a free version or free trial for the app – because I didn’t plan on getting the premium subscription. I read in the comments (on social media) that the free version of Bearable is good enough [for tracking everything that I needed to].

You also have to look if the app works for you. I went through so many trackers – paper ones and apps – and there were lots that didn’t work for more than two weeks for me. When the motivation, enthusiasm and the dopamine drop off, I’d just stop using them. I’ve been using Bearable since mid-February (4 months) that’s big for me – like really big – and you just have to know if it works for you.

I used Bearable for two days and then there was a sale and I thought ‘yeah I’m getting the Bearable subscription’ – because I want extra time periods for reporting and the correlations – and because I know it works for me. It works because it’s very intuitive.

You’ve kind of answered this already, but why do you think someone should choose Bearable versus another app?

I have something to add; I like that Bearable is so customisable. Like for the food diary I started with English but now I just switched to German because I thought ‘why should I Google what paprika means in English?’ I like that I can just do stuff like that in German because it just makes the app more personal to me. You can customise so much.

With Factors I can track anything; like if my partner snores if I want to track that, I can add it! I can use my own Emojis and it makes it easier to quickly see things like ‘okay that’s that emoji – that means x’ and so I don’t have to read the app all the time. I can also hide stuff that doesn’t work for me.

Yeah, it's just so customizable and it's so intuitive you just have to click with your finger. It's just like ‘how's my energy now?’ and if my energy is high I just press high and it adds the time automatically. But if I forgot to add it I can still add it later in the day so I really love that about it too.

That’s awesome to hear. I think it’s one of the things that James (Bearable’s founder) noticed for himself. He lives with chronic migraines and tried a whole bunch of other apps [before creating Bearable] and realized that they’re all so clinical. They’ll force you to track very specific things that. Like you said, most apps won’t let you track your boyfriend snoring even if it affects your sleep.

Another thing I noted down that I wanted to bring up is the Bearable team. I really love supporting small businesses because I really love that you get to interact with real people. You really notice this if you have a problem or a question. [So many companies] have robotic answers that don’t even help you with your problem. It makes a big difference when it’s a real human being. I was glad to spend that money on Bearable because I feel like it’s going to the right people.

I’m happy to hear that because it’s a thing that we actively try to do. We want to be patient-first and we want to be human because there are so many apps that – like you say – are robotic or aren’t interested in helping people, just making money.

Is there anything else you’d like people to know about Bearable that might not be obvious at first?

To be honest, I didn’t know there were extra sections – like medication – I was just adding it to factors. It was a bit overwhelming and I was confused by my medication insights but then I discovered there’s a medication feature and I was like ‘Oh my god. Genius. Yes of course they have it!’

Then I was like ‘I wish I could track bowel movements’ and then I was like ‘They have a dedicated Bowel Movements feature!’ and it’s great because it even tracks the consistency. At first I didn’t know what to select and just picked something and was like ‘Oh my god! There’s descriptions [to help me what to select]’ – it’s so helpful. I even showed it to my boyfriend.

Note. The names and images used in this article have been fabricated to protect the privacy and identity of our users.

Robyn | Fibromyalgia & Chronic Pain

How Robyn manages Fibromyalgia & Chronic Pain with Bearable I started using Bearable because someone told me about it several years ago, so I thought I’d

Rae | Mental Health & ADHD

How Rae manages Mental Health & ADHD with Bearable. I started using Bearable because my mental health was tanking as a uni student during COVID lockdowns.

Laura | Long Covid

How Laura uses Bearable to manage Long Covid. I started using Bearable because I have had long covid for two years now. In the beginning

How Winnie manages Anxiety, Depression, ADHD, & Endometriosis with Bearable

What’s Bearable helping you to achieve?
Living with physical and mental health issues is difficult. What’s more difficult is when doctors cannot fully diagnose the physical health condition and so cannot find effective treatment for it; and you end up playing mental health bingo because your symptoms are so varied that you end up on a myriad of different pills and talking therapies. Bearable is helping me to identify the root triggers for my physical and mental health conditions so that I can identify what makes me worse and also what makes me better. I can then make changes in my life to make me better physically and mentally and find ways to manage.

What impact has this had on your health and/or well-being?
It’s giving me a sense of control in my life again, something I haven’t felt in a while. I can actually control and see the results of what I do. I can try experiments with different exercises/foods/activities to see what actually affects me and make changes. I can actually see a way forward and see the light at the end of the tunnel again.

What are the main reasons you’d recommend Bearable to somebody?

1. Control of your life and your symptoms.
2. Discover how your everyday diet, exercise and other actually affects your sleep, mood, energy and symptoms (they might not be what you expect).
3. Trial new things in your life and actually see results if they help you or not rather than taking risks and not seeing outcomes.

What else would you like to tell people about Bearable?
I have control of my life again after a life of in/out of hospitals, therapies, different pills and doctors playing gambles with what they prescribe me. I can see my triggers and explain these better to my doctors showing them the data to help diagnosis and treatment. I can see what makes me better and I know what to add more of in my life.

Note. The names and images used in this article have been fabricated to protect the privacy and identity of our users.

Robyn | Fibromyalgia & Chronic Pain

How Robyn manages Fibromyalgia & Chronic Pain with Bearable I started using Bearable because someone told me about it several years ago, so I thought I’d

Rae | Mental Health & ADHD

How Rae manages Mental Health & ADHD with Bearable. I started using Bearable because my mental health was tanking as a uni student during COVID lockdowns.

Laura | Long Covid

How Laura uses Bearable to manage Long Covid. I started using Bearable because I have had long covid for two years now. In the beginning

How Bria manages BPD, PTSD, and ADHD with Bearable

What’s Bearable helping you to achieve?
Bearable led me to a diagnosis that changed my life. I downloaded Bearable in 2021 because I knew I was struggling with mental health issues but I was unable to keep track of how I was feeling. If I booked an appointment with a professional when I was feeling low, by the time the appointment came (whether it was the next week or even only hours later) I was unable to recall the symptoms I was experiencing. I had no idea my mood shifted so rapidly, and that I was experiencing so much memory loss. Once I was logging this (thanks to the regular bearable prompts) I was shocked. I took it to my psychiatrist and shortly after received a BPD, PTSD and surprisingly an ADHD diagnosis!

What impact has this had on your health and/or well-being?
Since getting a diagnosis I’ve been able to access resources that give me real help that I didn’t have before. I never could have gotten a diagnosis without Bearable helping me log my symptoms, because I would always present fine in front of my medical team and was unable to recall or articulate what was happening for me.

What are the main reasons you’d recommend Bearable to somebody?
Reminders are super neurodivergent friendly and the system is convenient. It understands that owning a journal and logging this all yourself provides more unnecessary strain on those struggling than being given options to choose from.

Note. The names and images used in this article have been fabricated to protect the privacy and identity of our users.

Robyn | Fibromyalgia & Chronic Pain

How Robyn manages Fibromyalgia & Chronic Pain with Bearable I started using Bearable because someone told me about it several years ago, so I thought I’d

Rae | Mental Health & ADHD

How Rae manages Mental Health & ADHD with Bearable. I started using Bearable because my mental health was tanking as a uni student during COVID lockdowns.

Laura | Long Covid

How Laura uses Bearable to manage Long Covid. I started using Bearable because I have had long covid for two years now. In the beginning

How Luna manages MCAS, EDS, and Dysautonomia with Bearable

What’s Bearable helping you to achieve?
Bearable is helping me understand how different factors, from weather to time with my friends, effects my various symptoms. It also gives me a more complete picture of how my symptoms fluctuate over time, which is extremely useful for doctors’ appointments, and seeing how new medications are working. For example, I recently stopped a medication that I suspected was making unrelated symptoms worse, and thanks to my insights, I could see that those things improved after I stopped.

What impact has this had on your health and/or well-being?
It’s really helping my piece of mind when I have doctors’ appointments because I’m no longer wondering, “wait, *have* my symptoms changed in the last 3 months?” I have the information right there, so I can plan what to tell my doctors ahead of time. On top of that, insights help me to confirm or discard theories about how certain things affect me. With that information, I can be better prepared for what the weather might do to me, or know to skip an activity if I can’t take the next day to recover.

What are the main reasons you’d recommend Bearable to somebody?
Bearable helps you notice trends you might not see otherwise, and it’s incredibly useful to have a record of your symptoms all in one place. It is user-friendly, and the most comprehensive symptom tracker I’ve found to date. It makes me feel more prepared for doctors’ appointments, and I think everyone with chronic conditions could benefit from that.

What else would you like to tell people about Bearable?
Even though I don’t feel in control of my symptoms, Bearable lets me feel informed about them. I’m able to see progress, which is encouraging. It also gave me confidence in my feeling that a particular medication was making things worse, which made it that much easier to tell my doctor. I’m not going to second-guess myself when I can see a chart that confirms what I’m thinking. I don’t think it’s exaggerating to say I would be heartbroken if I lost the app.

Note. The names and images used in this article have been fabricated to protect the privacy and identity of our users.

Robyn | Fibromyalgia & Chronic Pain

How Robyn manages Fibromyalgia & Chronic Pain with Bearable I started using Bearable because someone told me about it several years ago, so I thought I’d

Rae | Mental Health & ADHD

How Rae manages Mental Health & ADHD with Bearable. I started using Bearable because my mental health was tanking as a uni student during COVID lockdowns.

Laura | Long Covid

How Laura uses Bearable to manage Long Covid. I started using Bearable because I have had long covid for two years now. In the beginning

How Abby manages Lyme Disease with Bearable

What’s Bearable helping you to achieve?
Keeping track of those symptoms that are more infrequent or not daily. It’s also very helpful to keep track of depression because mine seems to be cyclical.

What impact has this had on your health and/or well-being?
Notice patterns of why certain symptoms arise.

What are the main reasons you’d recommend Bearable to somebody?
I have recommended this app to many of my friends who also struggle with chronic illness.

What else would you like to tell people about Bearable?
I meet with a Lyme disease treatment specialist every 6 weeks, and she treats me based off of my symptoms, diet, exercise, sleep, mood, etc for the last 6 weeks. Sometimes when she asks me a question, I don’t recall exactly and have to give a vague answer. With this app, I can review my last 6 weeks so much better and easier.

Note. The names and images used in this article have been fabricated to protect the privacy and identity of our users.

Robyn | Fibromyalgia & Chronic Pain

How Robyn manages Fibromyalgia & Chronic Pain with Bearable I started using Bearable because someone told me about it several years ago, so I thought I’d

Rae | Mental Health & ADHD

How Rae manages Mental Health & ADHD with Bearable. I started using Bearable because my mental health was tanking as a uni student during COVID lockdowns.

Laura | Long Covid

How Laura uses Bearable to manage Long Covid. I started using Bearable because I have had long covid for two years now. In the beginning

How Torri manages Arthritis & Mental Health with Bearable

What’s Bearable helping you to achieve?
The ability to track my chronic and often invisible illness symptoms.

What impact has this had on your health and/or well-being?
It validates me. I see the symptoms lined up, right in front of me, day after day, and I see that they are real.

What are the main reasons you’d recommend Bearable to somebody?
It is the most comprehensive, yet insanely accessible symptom-tracking app out there. I’ve recommended it to my therapist to tell her other clients about it, it’s made such a huge impact on my life.

What else would you like to tell people about Bearable?
I actually attempted to make my own symptom tracking app with block programming on an app designed to build apps; I couldn’t find a symptom tracker that fit all of my needs and I was really frustrated by the lack of representation for chronic and invisible illnesses out there. Then I found Bearable, and I was never happier to dump a project! Bearable fits *everything* I was looking for, and had more to offer than I could have imagined. And the new improvements coming are things I’ve wistfully thought of, but never thought to ask for! And now they’re becoming a reality.

Note. The names and images used in this article have been fabricated to protect the privacy and identity of our users.