There is something incredibly lonely about being ill when your body is in overdrive, constantly trying to carry you through, while you are in unimaginable pain.
Before I was diagnosed with Wilson’s disease, I spent so long trying to survive in a body that I knew was struggling, but I had no answers for why.
Every day, I would commute to work and push through the pain. I would get on the train, go to work, and try to carry on as though everything was normal, while inside I was struggling just to get through the day.
My body was fighting to keep going, and I was fighting alongside it.
But there were moments when the pain, exhaustion, confusion and lack of answers became so overwhelming that I remember not wanting to be here. Not because I didn’t want my life, but because I couldn’t understand how I was supposed to keep living like that when nobody could tell me what was wrong.
And when health professionals dismiss you, you begin to question yourself.
You start wondering whether you are exaggerating. Whether it really is anxiety. Whether it really is in your head. You become so used to being told that it will pass that you start trying to convince yourself of the same thing.
But it wasn’t just anxiety.
It wasn’t something I could simply think my way out of.
It was Wilson’s disease.
My body had been trying to tell me that something was seriously wrong, while I was doing everything I could to keep functioning.
I was surviving, but I was suffering in the survival.
And I think that is one of the hardest things to explain about being seriously unwell without answers. From the outside, you can look like you are coping. You can still go to work. You can still commute. You can still smile. You can still show up.
But nobody sees what it costs you to keep doing those things.
Sometimes surviving looks like getting on that train when every part of you is screaming to stop.
Sometimes it looks like pretending you’re okay because you don’t know what else to do.
And sometimes, surviving means holding on through a period of your life that you never should have had to endure alone.
I wish someone had listened sooner.
I wish I had been told that my symptoms were real.
Most of all, I wish I hadn’t had to reach breaking point before someone finally started looking for the answer.