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
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.
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