The Invisible Illness
My Story of How My Chronic Illness Took Over Every Aspect of My Life
If you had asked me 6 months ago to explain how my chronic illness made me feel, then I would have wanted to curl up in a ball and hide. Now, I'm learning to embrace it and take back some of that power.
Let's start at the beginning... Everything started out like what you would expect from a 14 year old girl. The tiredness and headaches were slowly creeping in, and the growing pains were lingering too. I had friends constantly complaining about how they were tired, some of them complained about headaches and some complained about muscle pains. I thought it was completely normal (which it is) and that I would grow out of it soon enough.
By the time I was 16, it was getting a lot worse. I had left school early to go to college. To get to high school it was only a 15 minute journey to get there or back, but college was a two hour commute. I would get a lift from a family friend halfway there and then the bus to the college. Getting home would be a 20 minute walk to the train station and then the train back home. I thought it was all getting worse because I had really long days and I was trying to adjust to the new routine. I wasn't wrong about it getting worse from it all, but it wasn't in the way I had thought.
A lot of days when I would get to the college, I would be completely exhausted. My body would ache and my eyes would be heavy. I couldn't focus in class and even trying to construct a sentence in my head wasn't really working. Some days I would get there and the aching from my muscles would be enough to make me physically sick. In the end, I only stayed at college for four months before I had to give up.
Throughout all this time, I was constantly at the doctors. I'd been referred to Neurology to see about the headaches. I had your typical case of migraines. My head being so sore that I could cry, but then the crying would make it worse. The light sensitivity making me wear sunglasses in my room when I was trying to avoid any form of light. None of this was explaining the extreme fatigue, the muscle pain and stiffness and all the other symptoms.
I had constant battles with the doctors. I'd been sent from specialist to specialist and none of them had an answer. Depression and anxiety had been kicking in and I honestly didn't know what to do. My plans failed had failed for college, I couldn't do basic tasks and the depression and anxiety were starting to take over.
After about four months, I forced myself to get a job. I knew I wouldn't be able to cope, but I had no choice. It was a job in customer care. It wasn't ideal but it was better than nothing. At least once a week I was off and I knew my employer was getting really annoyed. Sometimes I would work through the pain until I physically couldn't move. Other times, I would be sick because of the pain my body was in. Still, I managed to stay there for about a year.
Back into having no job again was awful. I lost almost two stone because I was constantly ill. Depression and anxiety had gotten worse than ever. I was only 17, but I already knew my life was going downhill. During this time there was a lot going on in my family life. Stress wasn't helping and I seemed to be getting worse and worse.
I'd done research for months and there was one thing that kept popping up. It was Fibromyalgia. I'd never heard of it before, but I'd mentioned to my doctor about what I thought it could be. Soon enough, my doctor was beginning to agree. It took me ages before I was able to get a rheumatology appointment, and even when I got there, I still felt like nobody was taking it seriously.
Four years after it all began, I finally got a diagnosis of Fibromyalgia. Even though I got a diagnosis, I still felt like nobody was taking me seriously. It was people telling me that I didn't look ill, or that I was just lazy. All of this took me down to rock bottom. A mix of feeling like my life was falling apart and my family life, it took over me.
In all of this, I've been through hell and back. Sometimes I still feel like I'm still in the hell of it, but I'm learning that I really need to start to take control of my life again.
Even though I'm not well enough to get a job, I'm still trying to build myself up gradually. Little steps are all it takes and eventually I'll get to where I need to be. I still have my bad days with my depression and anxiety, but Slowly but surely I'll get there. I don't know how long it will take, but with the support of my friends and family, I'll get there.
Don't ever let your illness define who you are. Don't stop trying to better yourself. Some days it will be a lot harder and sometimes you might take a step back, but that's okay. Keep going on and as bad as it gets, just realise that you're not alone.