I wish people knew the frequency of pain, as well as the number of days that are “I need to lie in bed all day” days.
It takes years to diagnose, time to manage, is often invisible, but isn’t the end of the world.
I wish more people knew how much it varies, it can be trigger by many different things but it also just varies of its own accord and you can go flip between good and bad days really frequently. Also how debilitating the symptoms can be even though you can’t see a lot of them, my most debilitating symptoms are nausea, dizziness and fatigue which it’s difficult to objectively see!
This year, I was diagnosed with ADHD, after a lifetime of thinking I was a scatterbrained weirdo who had depression. I’ve been a bit of a mess all my life – but this, this made sense! I could finally start to piece it back together! I could now say for sure, it was ADHD that gave me an appalling memory, zero concept of time, the inability to just get up and do something, no ability to make new habits.
My everyday life is usually a rollercoaster ride of emotions that takes me up and down without a break or warning; social interactions and interpersonal relationships are my kryptonite and I am in constant struggle with myself to allow closeness and love while another part of me fights against it. All that takes so much space and energy that important daily tasks are no longer feasible for me.
Last year I lost my job and decided to go to a daycare clinic to learn to deal with my problems. I got some good strategies and used several apps that should help me to implement them in my daily life (e.g. by writing down situations and related feelings and reflecting on them, or writing a positive diary to direct thoughts more positively).
All in all, I think you could say that Bearable has helped me (and still does) to become more aware of my everyday life, listen more to what my body tells me, accept my feelings and fears, reflect on myself and situations – especially in a social context. It helps me to recognize important connections, become more optimistic, re-experience the feeling of self-efficacy – even more as I have the progress in front of my eyes. Above all, it helped to recognize my needs behind all of this and to strengthen strategies by which I no longer feel so overwhelmed by my feelings that often.
When I was 17, I was diagnosed with schizophrenia and bipolar disorder. Still, 13 years later, I often experience delusions, paranoia, and hallucinations. Sometimes, I get confused with words and thoughts. I also suffer from major mood swings—some manias so high that I can’t sleep for days, and some depressions so low that I feel suicidal.
Today my anxiety story is just that today was a bad day. I have catastrophic thoughts about work and they snowball into catastrophic thoughts about my life. CBT helps but sometimes I just need to distract my brain with my phone. But this triggers anxious thoughts about how other people perceive me and how I should be doing more with my life. Tomorrow will be better but today is a bad anxiety day.
It took a long time – most of my 20’s – to accept that I had Generalised and Social anxiety. Not just that I had them even, but that they severely impacted my daily life. I’d found all sorts of coping strategies that helped me to pretend I didn’t have any problems – but sometimes they were too hard to ignore. At 27, I was lucky to move to a new city and make friends with people that spoke openly about their mental health. It was SO empowering to go through the process of learning to accept and embrace my anxiety. Now I try to find healthy ways to manage them and speak as openly as possible about my mental health. So that I can try to help other people in the same way that my friends helped me.
I wish people knew that it hurts like hell: When you wake up; when you’re awake; when you goto sleep, when you’re asleep..
I wish more people knew that fatigue is not the only and often not the worst symptom. It is a severe multi system disease with neurological, immunological, and endocrine symptoms (amongst others) that get worse with any exertion (physical, mental, cognitive)