Does my disability define who I am?

This is a question I often wonder and I would probably say in some ways yes and other ways no. 

I really like this quote by This Thing They Call Recovery as it sums up how I feel really well.

No my disability doesn’t define who I am 

I’ve always refused to let my disability define who I am. I don’t want my disability to become me and become my identity. There is more I can say about who I am than just the fact that I’m disabled. I love books, crafting, pen palling, riding my Batec, cooking and so much more. Those are also other things that define who I am.

A metaphor a friend Ruth introduced to me is our life is like a piece of cake and there's ten portions to who we are, but only one of those portions is our health. 

For me living with multiple chronic illnesses it sometimes feels like my health is a full-time job [that I didn’t sign up for] so dealing with my full-time unpaid job I can lose sight and not have the energy or time sometimes for the other nine portions of me. Sometimes as well when I’m in a crash like at the moment and I have little energy for ‘me things’ it does feel like all I have in my life is my health in some way shape or form. Exacerbated symptoms, additional symptoms, brain fog, Post Exertion Malaise, resting, care, insomnia, appointments, tests, extra medication like antibiotics or new medications to manage symptoms and more as well as the fact that like now I’ve still not recovered yet back to where I was 10 months on.

Sometimes I often see on social media people with chronic illnesses who I feel have let their health become who they are. For me I need balance. I need to step away from the chronic illness community quite often as I find it too negative for me. I don’t get the support I used to get from it. Now that support comes from my chronically ill/disabled friends who I find have a much more positive influence on who I am. There’s also balance with these friends as we’re all not just defined by our health we chat about our other shared interests that have nothing to do with our health and we’ll talk about our lives like work or what we’ve done recently. We’ll share our achievements no matter how big or small as we each know that we’re all at different levels with our health.

I don’t want my disabilities to define who I am. I don’t want them to be the sole focus of my life. Yes my symptoms do very often control my life but I don’t allow my disabilities to define me. I don’t (I hope) just talk to everyone about disability all the time. I do consciously try to make an effort to talk about non disability related things to people.

I try to have less disability on my personal instagram to get a break from disability as I live with it 24/7 in my own life but I do have a public account to share my lived experience of disability on there. However recently I’ve tried to put other content about myself on there too to share all ten portions of me on there not just the one portion. I’ve done this because I don’t want to over focus on disability and I want my disability to define who I am as I want to show people that there’s more to me than just my disabilities. 

Yes my health does define me

I feel that since becoming disabled the many challenges and situations I’ve faced (both positive and negative) has shaped and made me who I am today. I feel those experiences have made me more resilient, grateful and more able to speak out especially when it comes to what I need (plus lots of other things my disability has made me into today too). I’ve had to become an advocate over my care to get the medical and daily care I need. Before my disability I’d just put up with what’s happening in my life even if I was unhappy. I feel I’d be a different person if I hadn’t of become disabled. Yes I do grieve for my pre-illness life and what could have been but I’m thankful to my disabilities for the person it’s made me into. Maybe one day I will dance again, just now in my wheelchair - I look up to disabled dancers like Kate Stanforth. Plus maybe one day I will return to education and I will do my dream job as a therapist with children and young people. I just have to be patient and take each day as it comes. My disability has taught me how precious life is and not to take it for granted as you never know what might happen. I got the flu, something so mundane but I never recovered from it as it developed into M.E and my whole world turned upside down. My disability has also taught me to take each day as it comes as you can predict one day to the next, some days one hour to the next. I wasted my life before I got ill. Sometimes I wish I could start over on some things but I can only move forward. Disability has taught me a lot and in a lot of ways it does define me.

As well my disabilities define me because they are part of me. My health affects me greatly and heavily influences everything I do as I have to carefully plan and pace every aspect of my day. My chronic illnesses are also there permanently 24/7 365 with no days off and no annual. I didn’t ask to become disabled but disability is the only minority and biggest minority that anyone can join at any time.

I’ve wanted to share my lived experiences of disability like on this blog and collaborating with various charities and organisations. I have done many opportunities over the years sharing my lived experience and worked on things like how care can be improved, or how government changes affect disabled people like myself. Doing this awareness and advocacy work defines me as a disabled person. I hope I can be a voice for others, especially the work I do raising awareness for Severe M.E as many people with Severe and Very Severe M.E are unable to speak and share their story. There are other things I’d like to share more awareness about, both on my own through this blog and with charities and organisations. There’s only so much I can do however because of my health. I’d love to blog more regularly but my energy levels and time are both limited.

I hope that through sharing my lived experience and doing advocacy work it helps increase understanding and awareness or helps others to accept their illness or learn ways to live with it.

So in this way yes my disability has made me who I am. For example I’m a disability advocate and campaigner. I also identify as disabled and as a wheelchair user.