Chronically Ill Kat

Recently, I was skyping some friends and one of them mentioned they were picking up a brand new, 2020 plate car. After sharing the required excitement, I told them about my new and exciting vehicle: a wheelchair! A few days later, in another skype call, someone started a discussion by saying “now that we all have adult jobs and adult money…” – except, of course, I don’t. On both these occasions, I was able to joke about my differing situation but, secretly, these situations always make me feel a little weird and sad, because my life is so unlike theirs. I have begun to refer to this difference as ‘the Peter Pan effect’.

Having a chronic illness has often made me feel as if I am somehow unable to leave Neverland, so that, like Peter Pan, I can never grow up. I have spent the last six years being sick: losing my health, my fitness, my brain capacity and my ability to leave the house but, in the meantime, I am watching my friends, of the same age, growing up and achieving all the milestones we are ‘supposed’ to achieve in our twenties, and partying the whole way through. And to be honest, although I know that many of these things are an impossibility for me to achieve right now, it still makes me feel very inadequate and sad.

I became sick during university. This meant my friends around me were doing much the same as I was. They were poor students, available most of the time and didn’t know what they wanted to do with their lives. As we graduated and they started developing new friend networks and getting jobs, I felt very left behind.

Not only could they suddenly afford to do things that I could not, but they had made other friends, whilst I only had them. It’s very difficult to make friends when you barely have the energy to look after yourself, and seldom leave the house, so I often felt lonely and left behind. Also, they could now only visit when they had time off and had to book holiday if they wanted to do anything longer than a couple of days. And this gap in our life experiences has only grown, as they have moved on into further education, adult jobs and even to different countries. This side effect of chronic illness is something that I had not been prepared for – and it is really difficult to deal with.

I’m a bit afraid to be honest here and tell the truth, in case you think I’m a horrible person, but I find it really hard when another friend gets a new opportunity that is closed off to me. It is so hard not to feel bitter and very jealous. Of course, when a friend gets a new job that they wanted, or is able to buy a car or a campervan, I am incredibly happy for them, but it always comes alongside a sharp stab of bitterness and jealousy that I try to push down, because I know that it is mean.

To give myself away a little bit more, I often have to have a little cry when I hear about the good fortune of others. Every new step in life that they take feels like it increases the gulf between us, and emphasises the stark contrast between our lives. But now my dark secret is out, I wonder if others in my position feel secretly the same. I’m almost positive some do – because I think it would be super-human not to. Nowadays I let myself have my cry, and then remind myself that it’s just another part of the Peter Pan effect.

One of the things that makes the Peter Pan effect so difficult is that, whilst I am chronically ill and have a significantly lower capacity than non-chronically ill people, I still measure myself, and am measured by non-chronically ill standards and ideals. If I don’t get a good job, I will be poor. That is simply how it works – for disabled and for non-disabled people. Except that I often cannot get out of bed, so I cannot get a good job, no matter how hard I try. That means there will always be a financial barrier between me and my non-sick friends, and lovely as my friends are about this (and believe me they are lovely), it sucks being the charity case and of course makes me feel inadequate – despite the very obvious reasons why.

These norms and expectations are clear and inescapable. Chronically ill people are expected to hit the same goals as those who are not sick. When we do, if we hit one of them, we will never be celebrated for our achievements, because that’s just ‘normal’ – and when we don’t, we will always be failing at being able-bodied, and will be left behind.  

This aspect of the Peter Pan effect is also about external validation. We all know that when somebody gets a new job or a promotion, or has a child, or runs their first marathon, there is a reason to congratulate them and to celebrate their success. And it’s lovely that we do that. But when you are chronically ill and can’t achieve any of these things, it almost becomes as if you don’t exist. Mum mentioned this in her guest post: many people stopped asking her what I was ‘up to’ once they realised that, as someone who is chronically sick, I am unlikely to be ‘up to’ anything much. And that’s because my achievements are so insignificant, by the standards of others, that they don’t count as newsworthy or praiseworthy. People struggle to see that getting myself washed and dressed and feeding myself this week is an achievement – because everyone does that stuff anyway, don’t they?  

Just like Peter Pan in Neverland, I do achieve things all the time, and I am proud of that. But in the real world, Neverland achievements are seldom understood nor appreciated. For example, one of my most recent achievements, for which I am very proud of myself, is using a wheelchair. Accepting this was necessary, with all its implications, has been a real struggle for me, and so to finally have a wheelchair and to have used it a few times, is something that I see as very worthy of celebration. My foldable, shiny, lightweight wheelchair is my equivalent of getting a new car, and I’d love for people to celebrate it with me.

External validation for these things doesn’t really happen from the non-disabled world – perhaps because people feel awkward saying congratulations for something that seems to them almost like failure, or perhaps because they just don’t understand how much I might need validation too. (As a side note, a disabled artist on instagram has designed congratulatory cards for people getting new mobility aids which I think is truly awesome! They are available to buy here. If anyone wants to send me one…!!!). Maybe it does sound shallow, but everybody needs people to clap for them sometimes; even the most self-motivated person can’t do it alone. But as a chronically ill person, it often feels like being Peter Pan, all alone in Neverland, when Wendy and the lost boys have gone back to London.

But Peter Pan is just a story, and so is the Peter Pan effect. It is a story that we tell ourselves when we are feeling down, and comparing our lives to those of others who are living more normatively “successful” lives. Because when I look at my personal development in the past six years, I don’t feel like Peter Pan at all. Whilst I can’t list many of the standard achievements we are supposed to have achieved, I have grown up in so many ways. Sure, I don’t understand much about how to apply for jobs, and I’ve almost forgotten how to drive, so new cars aren’t very useful, but I am much more in touch with my body and my body’s needs than I have ever been. I have learnt how to pull through a panic attack, and I am a pro at handling the healthcare system in two countries, not to mention the contentment that I’ve learned to feel about the smallest things. I have my apartment, a loving partner, and my therapy cat – and let’s be honest, I am almost over-prepared for being old and ill!

In fact, sometimes I feel sorry for people who are not in Neverland like me, but are stuck in the rat race, exhausted because they constantly feel they need to achieve all of the important goals society has set them, and seem unable to appreciate the things that they have. I’ll probably never be able to afford much, but at least I won’t burn myself out trying to achieve unrealistic goals that I don’t necessarily want to attain. Instead of forcing me to remain a child, I have grown up in partnership with my chronic illness. I have, out of necessity, had to decide where to focus my energy, and dealt with the fact that I can’t do everything (or really anything much), something that many people of my age have yet to learn.

So whilst the Peter Pan effect sometimes does feel very real, and can really negatively affect my emotions, I know that when I step aside from the comparisons with people who have completely different limitations on their lives, I have grown up and achieved a lot in the last six years. It may not have been the sort of growing up that I can shout about, because not everyone would understand, but, nonetheless, I can enjoy it quietly for myself:   

‘There could not have been a lovelier sight; but there was none to see it except a little boy who was staring in at the window. He had ecstasies innumerable that other children can never know…’ Peter Pan by J.M. Barrie