From ‘sick kid’, to just being me
I was chatting with a friend the other day about a young person who had lived with a chronic illness since they were in primary school. This person was a typical “sick kid”. Obviously, I felt for this young person because I was around the same age when I started having problems with my own health and body.
This friend mentioned that she felt this chronic illness had become this young man’s identity, and even without knowing him, I could totally agree… Because when you’re diagnosed with a chronic condition as an adolescent, your illness does get messed up with your identity.
Adolescence is a time for exploring, experimenting, rebelling, pushing boundaries, gaining knowledge of the world, yourself and how everything in life works. At the centre of this time is the formation of our identity. We start working through the “who am I?” questions, and we start forming an image of ourselves and where we fit into the world. We pick up bits and pieces of information about ourselves from all sorts of people and places, and these eventually form our perception of who we are.
This is something that I have both struggled with myself and seen countless young people struggle with regarding their hypermobility & its related diagnoses. I couldn’t see it at the time, but my identity throughout high school was very much tied up with my condition. And I see so many young people now whose whole world is their illness (understandably).
There was a time when I could tell you every surgery I’d had, in detail including dates and specific surgical techniques used; I could tell you the list of meds I was on, what I was allergic to, what had worked in the past and what was a big failure. I knew it all because it was my whole world. It was my life. And it was my identity.
I was the kid in pain; the sick kid; the anxious kid.
I was known in primary school as the girl with the sore knees. In high school, I was known for what I couldn’t do (participate in PE) rather than for what I could do, or better still, who I was. And my identity was genuinely formed around this belief, this message that I was getting, that I was different, that there was something wrong with me, that I was broken.
I didn’t have normal teenage experiences. I wasn’t able to do what my friends were able to do. I stopped playing sport and participating in PE when I was in Year 8. I couldn’t go rollerblading, bike riding, ice-skating; I couldn’t go to school dances, I couldn’t spend the whole day at the mall, shopping and just hanging out. I didn’t go to parties, or if I did I didn’t stay late. I didn’t date.
My condition was limiting my life…. and slowly (or was it quickly?), I became fused with my illness. My condition and I became the same thing. And let me tell you, this continued well into adulthood.
I allowed (I use this word very loosely) my friends at uni to call me “Broken Shell” (because in our group of friends we had two other Shell’s – one known by where she worked and one by where she was from). I was “Broken Shell” because my body was always ‘broken’. I was even being defined by my illness by those around me.
I often see memes and posts reminding people “you are not your illness”; “you are not what has happened to you”. And it kind of rubs a part of me the wrong way. The adolescent part of me that lived all those years as though me & my illness were one and the same.
I don’t think there are too many young people out there who have been diagnosed with a chronic condition in adolescence that doesn’t get consumed by their condition, whose identity is not affected by their condition. Even the most well-adjusted among us would struggle with this.I think those memes, those sentiments, are better aimed at adults, and those who have moved through the journey of being fused with their illness and come out the other side.
These days Instagram is filled with people who post about their chronic illness, which at first glance used to make me cringe (really badly!). But what I’m seeing emerge is something I feel is really positive – some young people are starting two accounts. Their personal account, and the account they use to post about their illness.
I like this.
I think this is really important.
This is young people saying I am a person with a life just like everyone else. And I have an illness (that often frustrates me and I want to vent that to the world), and I choose to separate the two.
I personally believe this is a step in the right direction. I think the end goal is being able to integrate this sense of two selves, but I think this separation of illness from person is an important step towards acknowledging both selves. We cannot integrate that which we cannot acknowledge. (Note: I’m not so thrilled by the “crippled” accounts, but I suppose whatever helps you get through the day, right?)
I believe we do not have to be defined by our condition forever.
For a while there (adolescence), I’m not sure that there is actually any choice in the matter. There is nothing else to be defined by. It’s hard to work out who you are apart from the illness; the illness that follows you around every day; ruins your plans; constantly reminds you that you are different. It’s hard not to be defined by that when you haven’t had any other experience of yourself and who you are, by which you wish to be defined.
I feel that the identity as a “sick kid” or a “chronic illness patient” is a transitory identity…. it is one that we can, and hopefully do grow through and out the other side of…. because, with age, the world opens up to us. Life isn’t just about school, friendship circles, grades and illness. Life becomes so much more than that… and so do we.
We become someone who just happens to have a condition. And as life starts happening, we start forgetting some of the details that used to be so important; we focus less on our illness and more on the rest of what happens in this thing called life.
One thing I know for sure: it’s a process, and it takes time. Be patient with yourself. It’s OK to be wherever you are on the journey, as long as you are moving forward.
Michelle is a Senior Occupational Therapist working solely with adults with hypermobility and related conditions. Michelle is the owner of Hypermobility Connect, an online platform for people with hypermobility to connect with resources, health professionals & each other. Michelle practices OT in her private practice and provides education to health professionals relating to hypermobility conditions.