I am so tired now. It’s about 6 years since I was diagnosed with PBC – a chronic progressive autoimmune disease that eventually causes liver damage. It’s not curable, the symptoms for me include pain, severe fatigue, memory and concentration problems. For others it’s asymptomatic. Years ago, the prognosis was very poor but the medication we take supposedly slows progress (though it is a bit speculative).
The biggest problem for me is that lab tests are no predictor of symptoms and symptoms are no predictor of lab tests/ liver damage/ disease progression. That’s well documented in the clinical research
So every time I have contact with a benefits agency, I have to explain and reexplain.
It’s soul destroying. Aside from the fact that life has changed so much anyway, I am constantly on edge because I am so scared of losing an income
I am saying this for the first time and not sure if I want it published but I’ve had suicidal thoughts – I figure that I have now got so little to offer any one, I might as well not be here. The only thing holding me back is that I have responsibility for caring for other people. They’re keeping me alive at the moment.
If I was able to change anything at all, it would be that the powers that be recognise that for the most part, people do not want to have lives like this. People want to work, play, have relationships. So much of our time is spent on the struggle for mere existence that we don’t get to live