One of the first questions you get asked when you are getting to know new people is “so what do you do?” If you have a chronic illness and, like me, are unable to do very much, this becomes a very difficult question to answer.
Our self-identity is very often made up of the things we do, such as our jobs, our hobbies and our pastimes. So naturally, when we are unable to do these things anymore, we face a huge loss of identity. Rebuilding an identity and mourning the loss of your “healthy” identity is a huge and very difficult challenge for many chronically ill people – me included. I have found that rebuilding my identity has been hugely interlinked with accepting the fact that I am disabled; but it is a long and ongoing process. Whilst my story involves a huge change in identity due to illness, there are also many other situations where this can be relevant, particularly in the context of a world with corona where many people are losing jobs.
My Story
Healthy Kat
Before I became sick, I was an incredibly active person and a high achiever. For my entire life, I had juggled school work, ballet lessons, learning two instruments and kayaking at national level. And, somehow, I still had energy for friends. I prided myself on being incredibly sporty and trying hard at everything.
Once I got to university, I became somewhat of a party person. I drank a lot and was almost always up for a night out. Living in Amsterdam, that meant cycling to and from the centre of the city and dancing all night. Looking back, I feel like I must have had endless energy! But at the same time as this, I was studying at an especially intense university: failing a course could result in being expelled; missing five classes in the 16-week semester could lead to failing; and we had either a graded exam, a paper or a presentation every week for the majority of the semester – in four different courses. It was a lot!
The beginning of sick Kat and the loss of my identity
In the midst of all this, I got an incredibly bad fever. Over the next six months, I gradually stopped being able to do any sport, drink alcohol or party – as I explained in a previous article. And that is where my identity crisis began.
I could no longer define myself through being sporty and active; I could no longer define myself through partying hard. I was no longer the fun, loud and outgoing Kathryn. Instead, I was dragging myself through my degree, focussed on passing all of my course and graduating, but with very little energy for anything else. And I felt so intensely that I had lost myself and had no identity left. Looking back, I can see that I spent my last year at university really struggling to process and come to terms with my ‘new normal’, and dealing with everything that I lost. I was cycling through the first four stages of grief on a very regular basis: denial, anger, depression, and bargaining.
But at this point in time, I still had some way to identify myself. I was a student, in a foreign country and at a good university, and I could get a sense of purpose and some self-esteem from that. It was a way to introduce myself when I talked to new people and it didn’t necessitate centralising ‘sick Kat’ as my identity. So, although I was definitely grieving for the lost Kat, I did have something with which to associate myself.
After graduation and my big loss of identity
But then I graduated, and immediately got sicker. My body did that end of school flu thing, but chronic illness style, so there was no way I could do very much except try and keep myself alive, fed and watered. So, not only did I lose the last remaining part of my identity – as a student – but there was no way that at this time I could try and build a new one.
And, at least for a few months, this was actually okay. Many of the friends who had graduated with me were having post-uni identity crises of their own – and many of them were struggling with some sort of burn out, as the result of studying at such a toxic university. So, for a while, we had conversations together where we tried to convince ourselves that our worth was not defined by having a career, or by being in paid labour, whilst they recovered. And this was great for me, because I was not the only one who had lost my identity and was confused by what I had become.
But very quickly they built up new identities, becoming poets, activists, masters students, and I was left “rotting in my bed”. This was when I felt my loss of identity most strongly.
So, for the next year or so, I lived a different fantasy every week. I would look up a new masters study that I could do, an internship abroad, the JET fellowship programme, and I would plan my future around that, giving myself one year to get fully healthy from my CHRONIC illness. And in my heart, I knew this would probably never happen; but I still told everyone – and switched through these different plans at a startling pace. My poor family could never keep up with the latest scheme. But this gave me some sort of idea that I had a future where I wouldn’t have to deal with being sick. It meant I didn’t have to accept that my illness was potentially forever, and it gave me a future identity to talk about, and a gap where I could allow myself to be sick, before I laid claim to a clear identity again – which somehow made it better.
Well, surprisingly enough, my chronic illness didn’t disappear within a year, so none of these plans ever really worked out. Ridiculously enough, I was genuinely a bit surprised, and very upset, by this. And it was at this point that I began to realise I maybe needed to come to terms with the fact that chronic does actually mean chronic. Who knew?!
Rebuilding my self-identity
By now, I had been sick for two or three years and was beginning to accept the reality of my situation. I found it really hard to see any point in picking up new hobbies, or learning new things, because I knew I wouldn’t be able to progress with them as fast as “healthy Kat”. But my friends kept pushing me, trying to get me to realise that it was okay to start something and not be good at it – telling me it would genuinely be good for me to at least try and start following one of my many dreams.
The problem here was that I had lost any sense of the future. I had absolutely no idea what I wanted any more. When all of the open doors to your future are suddenly slammed shut, because your body can no longer support those futures, it becomes supremely hard to reconnect with any goals you might have – even those that are still achievable. It is hard to plan for a future when you have no idea what state your body will be in – and whether you can rely on it, even at a most basic level.
And so, I began finding any way I could to define myself. I really, really did not want to be seen – or see myself – as just a pitiable, sick girl. I tried a lot of things, often huge projects, like compiling and reviewing a huge zine library so that I could be the zine expert. None of these projects really worked out, but it was the beginning of trying to build an identity for myself around the realities of having a sick body.
Travelling
This is when things began to change. I went on a month-long trip to Malaysia that I was realistically not healthy enough for. But it turned out to be life changing. When I was abroad, meeting new people I didn’t know, I was just another traveller, and could foreground things other than my sickness. I began to feel like a human again, and not just a sick person.
I got so addicted to this, that I moved back to Malaysia for another few months, and then lived between two countries for a while. I no longer felt so intensely the loss of identity. Suddenly I was not ‘sick Kat’. Instead, I was ‘that adventurous travelling friend’ – the one who would probably end up living somewhere tropical, with a beach; the one with crazy travel stories to tell. Somehow rotting away in a hammock abroad is far more glamorous and feels way more exciting that rotting away in my bed at home!
It was here that I finally reconnected with the part of me that could have goals and dreams. I started enjoying playing music and singing again, I started learning a new language (I couldn’t let my friends talk about me in Malay!) and I even learned to slackline, albeit very slowly. I hadn’t felt so much like myself for a really long time and it was amazing. It was a chance to redefine myself – and it brought me a long way closer to accepting that I am disabled.
Unfortunately, I did get a little too carried away with enjoying myself and ended up overdoing things a little. And, inevitably, this made me sicker. In fact, I became sick enough that I ended up needing to move back in with my parents for a while, to get some care and support with basic tasks like laundry and cooking.
However, when I returned to Amsterdam, I felt more confident with who I was and what I wanted. I knew I was a traveller, I was creative and I liked writing.
Sustainable identity building
Finding myself back in my childhood home, in a tiny rural English village, with almost no friends around, was quite a shock – and honestly very difficult. But I took the chance to really focus on rebuilding myself. With my new-found confidence and the reconnection that I had begun to make with myself, I decided to work on that.
I started doing yoga regularly, even if all I could do that day was to lie in child’s pose; and most importantly, I started journaling. Every morning I wrote, and actually still write, three pages. Sometimes they are just the words I AM TIRED, on repeat, but at other times my writing really helps me to see what I want to do and how I can start to achieve the things that I want to achieve – at least on a small scale. Thanks to these things, I began to see that I was making progress and that I was achieving something – and that that was enough.
Around this time, with the luxury of not having many things to worry about but myself, and with the aid of my new, more reflective pastimes, I began to revisit and re-evaluate some of my priorities.
For a long time I had felt I was the burden friend that people felt sympathy for, the one who didn’t have so much to give. All of my friends are incredibly talented and interesting people – more so, even than the average,I am convinced – so I often felt I was the friend with nothing to bring to the table. But they clearly loved (and still love) me, it would be churlish to think otherwise, so I learnt that, even without a clear ‘thing’ or a clear self-identity, there was something loveable and valuable about me.
I began to appreciate that there is something Kathryn about me, even if I am not living in the same country as them, even if I don’t do anything but lie in bed or on a yoga mat. What I realised is that the way in which I treat my friends, the way in which I communicate with people is also part of my identity. Even if I never moved from my bed again, I am an important and valuable person to those around me, and that is not a coincidence. I treat my friends and family with love, care and respect – as they treat me – and that is a huge and important part of my identity. It just took me a long time to realise it.
I feel now that I have reached a place where my disability has actually become a huge part of my identity. It may seem obvious, but I needed to find a balance within myself where I was not just ‘sick Kat’, the sad disabled girl, but where I still accepted the major role that my chronic illness had played, and would continue to play, in my life. And with that realisation finally in place, I was able to build an identity around it: one where I can take pride in the writing that I am doing, in my progress at yoga, in my occasional slacklining, my cooking repertoire, my flute, my belief system – in myself as an individual, living with but not defined by my chronic illness.
This does not mean that I have “overcome” my illness. I never will and that is not a goal. Instead, I have learnt to work with my illness, to accept it, and to build my identity and self-worth in a way that works with my body, as opposed to against it. In all honesty, I don’t think I will ever stop grieving for the Kat that could have been, but that has far less influence on my self-identity than it once did. It mostly comes back on days when I am feeling sad or particularly sick. And I don’t expect or even want that to leave – because I really do miss the fun and the active things I used to do.
What I have learnt along the way
1. It is okay and normal to go through an identity crisis and feel a loss of identity when your body suddenly stops working the way it used to. One’s identity continuously changes, but not normally in such a sudden way. It takes, time, patience, and work to recover from this. It has taken me five years to get to where I am now, and I still have a long way to go. That is normal and it’s perfectly okay.
2. Chronic illness is now a part of my identity – there is no way it cannot be. I don’t have to fight this, or try to overcome it; I have to accept it, but realise that does not define me, even if it conditions everything about me.
3. I am incredibly lucky to have a supportive family and a supportive set of friends, all of whom have helped me emotionally, called me out when it was necessary and been there for me financially when I’ve needed help. My partner has also been incredibly flexible about which country I have lived in: living between three has meant a lot of time in a long-distance relationship. Without all of this care and support I would never have had the space, time and resources to be able to rebuild myself and pursue my goals.
4. I don’t need to feel ashamed that I cannot work and earn money for myself. My identity is not based upon my productivity. It is based on what I care about, my priorities and it is about how I see myself. The question of what I do is still awkward, but I don’t lie anymore and I don’t answer that I mostly rot away in my bed. Because I see myself as more than that, even if I do spend a lot of time in bed.
5. I don’t have to do something all the time, nor do it especially well, to identify with it. Slacklining feels like an important part of my identity, yet I haven’t slacklined for six months. But I still spend a lot of time thinking about it and looking at pictures of slackliners, so, it is clearly still important to me – and that is okay.
6. Journalling really is as good as they say it is. It took me so long to actually start journalling and free writing, but it has helped me to reconnect with my goals and with myself in a way I never expected. It is also, now, how I come up with almost all my new ideas. It has really helped me explicitly to realise a lot of things about myself and to find ways to grow into my future.
Please reach out if you are struggling with a loss of identity
If you are feeling this loss of identity for whatever reason and want someone to talk to about it, please feel free to reach out to me. I have really struggled with this over the years, and would love to listen to and support other people who are going through the same or similar things.
Links
- A short guide to morning pages/journalling
- A short article about the way that writing about your life can raise your self esteem.
- A list of simple Tips for making peace with your chronic illness
