When I Feel Like My Chronic Illness Has Become My Identity

A friend of mine once said: “Your life is like a piece of cake and you have 10 portions, but only one of those portions is your health.” But 24/7 I have to deal with my symptoms, take medication, do my physiotherapy exercises, attend medical appointments (some quite a distance from home), make telephone calls and send emails. I have regular tests such as ECGs and scans, have my blood taken, and keep an eye on my blood pressure and heart rate pretty much all the time. I’ve had to learn to adapt and do things in different ways or use aids and adaptations to carry out tasks, adding to the medicalization of my life.

Dealing with all of this now feels like it’s my full-time job. It starts to feel as though it is all I have in my life, to the point where I feel I’ve lost my pre-illness identity, and the person I once was when I was well is no longer there. I could go back even further than when my health problems became full-time to the health problems that I had as a child and teenager. Most of my life has been medicalized to some degree.

On top of that, some of my friends have disappeared from my life because of my health and I find it difficult to meet up with people, making my life even more isolating. Activities I once enjoyed are no longer a possibility — I used to love to dance, go to the gym, swim and go to yoga classes. Now all things of the past. Even things I can still do often get sidelined. Socially I’ve become housebound due to my health, and meeting up with people is difficult because I struggle with my energy levels and my health is so unpredictable, most plans get canceled.

Because my health has become my full-time job, I often have to put aside the other nine portions of who I am, or rather, my health has done that. My health, or lack of it, can start to feel like it’s my identity as it’s more or less all I have in my life and it can be very isolating and all-consuming.

I’ve tried to rebel against this and make an effort to not let my health problems become who I am. I’ve left online “support” groups as I found them more toxic than supportive. “You don’t have to be the most struggling to be struggling.” — Jenny, @thisthingtheycallrecovery.

This year especially, I’ve tried not to over-medicalize my life in the ways I can. On my blog, I’m doing fewer health-related posts and I’m trying to shift my mindset as much as I can. Sure, I still need to take medication, put up with more symptoms than I can count, use my profiling bed, wheelchair, bath lift etc. and go to appointments and have regular ECGs and blood tests, but I don’t feel a need to shout out about it. I am still very much limited by my health and I am still housebound, but I’m trying to claim all 10 portions of who I am, not just the illness portion.

In health care, I feel professionals should be more holistic in their approach. Most often the medical model is used, which solely focuses on the illness. This reinforces my illness identity. But with the social model, other aspects alongside the physical aspects of who I am as a person would be explored, such as my social, emotional, spiritual and cultural needs and identity — the things that make up who I am as a whole.  I feel a holistic approach helps people like me to know there is more to our lives than just our health problems.

It’s far from easy. Dealing with my illnesses and disabilities is my full-time job. I would much rather be in another job, but for now, just getting through the day without ending up in the hospital is my job. I know how easy it is and can be to slip into the mentality that my health is my identity. I could write so much as the medical me, but often I still stumble when thinking about other parts of my identity and what non-health labels I would assign to myself. I often have to check in with myself and brush aside the giant health pile and remind myself of who else I am.

I know how easy it is to lose yourself to your health and let it overwhelm you and become your identity. I could so easily fill my bio on social media with a list of letters equating to the list of diagnoses I’ve collected since I was born. I could so easily let my social media account be filled with pictures of my medication, wheelchair, dislocated joints, splints, waiting room selfies, ECG readings and a whole bunch of other things that fill up my life because that is my life. My health and my life go hand-in-hand, but there is so much more to me. Some days I do have to dig a little deeper, or let my day be a medical day, but I’m trying hard not to let my life and my identity be a medical identity.