Understanding chronic illnesses: my experience being diagnosed at 20
By Millie Smith
My diagnosis of a chronic illness at 20 didn’t come as a surprise. After being diagnosed with Joint Hypermobility Syndrome at 15, I was already well aware that my future would include an ongoing battle with joint and muscle pain. But when my symptoms progressed, it was clear there was more going on.
I pursued the doctor; I knew my symptoms were consistent. I was the one pushing for a doctor to listen to me; when a diagnosis of Fibromyalgia came at 20 what was I meant to feel?
Part of me felt elated. I had been heard. I had an answer. I wasn’t crazy or imagining my symptoms. A doctor had listened to me, sympathised and diagnosed an issue. I could move forward and learn how to manage this condition.
However, another part of me was heartbroken. The reality hit that this is chronic. This condition isn’t going anywhere, it won’t get better or ease. That this will make me ‘different’ from your average 20-year-old. My pain isn’t going to go away.
I was glad to have been heard, but it can be tricky to come to terms with such a heavy diagnosis at such a young age. Having a chronic illness makes you a little bit different from the people around you. I have to listen to my body – what is it capable of doing today? Does it need rest? Does it hurt? How can I help it feel better? Am I overdoing it? Am I still able to go to that quiz with my friends later or do I need to stay home? Having a chronic condition means that you’re not always in charge of your own body. I have to listen to what my body needs, or I know I’ll pay the consequences the next day.
Everyone deals with illness differently, and most people aren’t looking for sympathy but for understanding from friends and family. Here are some tips for helping people you know who may have chronic conditions:
- Please don’t get angry or upset with us – we may cancel plans at the last minute, this isn’t because we don’t want to go, but because we physically can’t.
- Keep us involved – continue to invite us places, even if we can’t go it is nice to know that you still want to hang out with us.
- Please don’t suggest that we ‘try yoga’ – many of us with chronic conditions are educated on our condition and our bodies, suggesting things which you’ve seen online or that’s worked for someone else isn’t always helpful. Typically, we’ve tried most things, and we’ll know whether we’re capable of that or not. We appreciate you trying to help, but ‘yoga’ won’t cure us.
- Check in – ask us how we’re doing, it’s nice to have people reach out if we’ve withdrawn due to a bad day and it’s always nice to have a chat when we haven’t spoken to someone in a while.
- We’re a different kind of tired – if you ask us how we are, and we say ‘tired’, we mean something different to you. Usually, we are tired of not sleeping well due to pain levels, we are tired of a constant pain, we are tired of feeling restricted by our bodies. We’re not just a little bit sleepy – usually.
Everyone with a chronic illness copes differently, so make sure you’re asking what you can do to help your friend or family member specifically – what works for one, won’t always work for someone else. There can often be a misconception that because we’re technically ‘ill’ that we won’t want to have fun or hangout, this isn’t the case. We just have to be a little more careful with what we do day to day.