One of the hardest things I found about getting sick was the feeling that I had completely lost my identity: who I was, and what made me me. In the first years of being sick I found this really difficult. Turns out, chronic illness identity, the future and dreams, are all big and complex topics for chronically ill people.
Gradually, over time, I have narrowed down what I consider important about myself, but when I introduce myself, one of the first things that comes up is my illness, quite naturally, because it has the biggest impact on my life. And the rest of what I consider me doesn’t feel that much, that substantial or even really that interesting.
But recently, with this new lease of life, I’ve found myself getting the chance to think about who I am, what I want to do, and how I want to get there – something that I have not had the luxury to think about for a very long time. I feel like I have finally managed to get out of survival mode and start figuring things out!
And I find myself as confused as any recent university graduate, even though I left uni quite some time ago. I have all these things I’ve wanted to do over the years, but because I’ve not had the energy to do them, or the network to help me with them, they have just never happened. And now that I have a bit more energy, I find myself wandering along trying to pick one of the million ideas I’ve had to actually focus on.
And whilst it is a little confusing, and can feel a little like I’m deciding this all very late compared to my friends, it’s exciting to genuinely feel there is a future again. To make plans for the future as if they might actually happen, to trust I might have the energy to do some of them, and to dream that I can achieve things. In fact, it is exciting to have the energy to really dream at all.
I think one of the hard things about being sick is that you lose all sight of the future. Yes, we are told that living in the now is the best thing, but if that’s all you have, life can feel very meaningless and purposeless. And without meaning and purpose, it is easy to feel empty and identityless.
What do I mean that you lose sight of the future? When you are too sick to get out of bed often, or leave the house, your world becomes much smaller, opportunities don’t appear, and it can feel never ending. The longer you spend like this, the more disconnected you can become, which means you mostly stop doing things or arranging things – so that your focus is entirely around being sick. When surviving and looking after yourself costs all your energy and time, there isn’t much left to think about the future or who you really are. And to be very real, although I always hoped I would get a little better, for many people, that hope might simply not be realistic.
I think something else related to this is that being very sick makes it really hard to think. Imagine when you last had the flu, how little you felt like thinking about anything, even what you were going to eat that night. Well that is, realistically, what my brain feels like most of the time. So thinking is just very hard. And that has repercussions on what I want to do and therefore on how I see myself. And if you build in several years of being unable to do things, this is hardly the prerequisite for confidence!
In fact, being sick narrows your opportunities in so many ways. Now that I have a little more energy, I can reflect again on how much more difficult everything is when you are predominately housebound. The fact I can leave my house four or five times most weeks already opens up so much space for me to dream, and to craft my identity a little.
Something else I notice, since feeling a bit better, is how much easier it is to be audacious when you have more energy. Ironically, nowadays I have more energy to defend my right to use disabled queues, disabled seats, and disabled facilities that I need. I also feel much more able to ask for help, for instance one of the things that really holds me back is money, so recently I just asked one of the courses I want to follow if they provide scholarships, since I am disabled and on a low income, and they answered giving me that opportunity. It turns out if you don’t ask you don’t get. But asking requires you to have more mental space and energy that I have had during my big health dip.
This is a slightly rambly post, but I think, once again, I am learning a lot about myself. My increased energy has given me space to reflect on how hellish and hopeless the last couple of years have really been; something which is hard to do when you are in the middle of a crash and have, to some extent, to normalise it to be able to deal with it. But coming out of a long crash and seeing more closely how much space there is to feel human when you have more energy, I can finally see quite how challenging the last few years have been.
Here’s hoping I am crash-free for a while, and sending love to all those currently struggling.
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