The identity struggle when stuck down by chronic illness

On New Year’s Eve I went to a party. This isn’t something I do anymore and I was promptly reminded why. It was torture! The noise, the lights, and the busyness all pushed my senses into overdrive. There weren’t many places to sit, and at this kind of thing people don’t sit. Sitting at a party surrounded by people standing around you talking is a very lonely place, but I have to sit, as I get too tired standing up. 

Just getting ready to go out was more than enough exertion for me really, but as it was a special occasion I was determined to push though the pain and tiredness. I had rested as much as I could the days before, and then on the day itself I got lots of rest and made sure I rested between getting ready and going out. I just wish it had been worth it. I wish I could have enjoyed the activity I would pay so heavily for with days of exhaustion afterwards. 

Because I couldn’t join in with what everyone else was doing, I spent a lot of the night sat on a chair on my own, looking at my phone. Not because I particularly wanted to be on my phone, but because these days it seems to be the only socially acceptable thing to do if you are sat on your own. The other girls were all wearing glamorous high heels, but I wore comfortable flat shoes, because just walking and standing is more than enough without adding in heels. 

The me before chronic illness would have loved something like this. I would have made full use of the open bar, and been the first on the dance floor and the last off. I would only have sat down if my feet were hurting too much from my ridiculously high heels. I wasn’t a party animal, but I could definitely let my hair down from time to time.

I used to work my full time job then go out most nights of the week doing various hobbies. I loved learning circus and going to choir and I would cycle everywhere. I was intelligent with a quick mind and loved using my brain. I enjoyed being independent and self-sufficient, and I was proud of it.

Now I’m mostly housebound, I can’t work, and spend every evening in front of the TV. I have to rest a lot, and even then I still always feel unwell and exhausted. My thoughts often don’t process properly, and despite having a maths degree, I can find myself struggling with simple sums. I’m reliant on help and support from others to do pretty much anything. I can’t walk more than a few metres, and have to use a wheelchair on the rare occasions I do go out. 

So which person am I now? I still want to do the same things, I just can’t do them, or my health stops me enjoying them if I try. Have I changed because my health has forced me to? If I was well I would be doing all the things I used to enjoy, so have I truly changed? To an observer I would be a completely different person, perhaps seen as lazy or unmotivated, but that’s not really truly who I am. 

I think the real question is, what is it that defines who we are? I’m starting to believe it’s not what we do, despite what society thinks. It may be in part about what we want, our desires, but I think it’s probably something deeper than that. I think it’s about what we really care about, what matters most to us, and how we treat other people that truly defines who we are. 

In viewing self in this way, it enables people in situations similar to mine to regain some sense of worth. It’s easy to feel like you’re worthless when you’re unable to work, reliant on help from others, and feel trapped in your own body. But this isn’t true. Everyone has value, and the true worth of someone is how they impact other people, not how much money they make or how much they get done every day. 

It’s a big challenge trying to regain my sense of identity and value when everything I felt defined me was taken away by ill health. It’s also impacted my relationships, which only further reinforces the belief that I’m somehow worth less now. It’s still a work in progress, but I’m starting to acknowledge that my value is not about what I can do, but about who I am.