Disabled Grief

I have been thinking about and planning this blog post for a while but in true chronic illness style my body did not want to cooperate. It was all I could do to just get through the months, being as good a mama to my daughter as I could. This blog just had to wait. I have managed to put some words to my thoughts now. 

Although I fully embrace my disabled identity and I am accepting of my restrictions, I have been thinking over the grief that I have experienced since becoming more disabled during the course of my life.  

I was born with a genetic connective tissue disorder but I did not find this out until my early 40’s. I have symptoms on my health record of this disorder from age 3 but this was not recognised and my symptoms were not put together; until I did this myself in my 40’s. I went through my life not realising that being in as much pain I was in and the fatigue that I was experiencing was not normal. So, I went about my life and pursued a career in nursing and then midwifery. When I achieved my goal of becoming a midwife, I was never able to work full time due to fatigue and the way my body felt doing 12-hour shifts. I was still unaware at this point that my body was actually one of a disabled person. I went further in my career and went back to study a Masters Degree in Advanced Clinical Practice. This would have allowed me to work as a Consultant Midwife and this was my intention following the completion of the degree.  

Things did not pan out the way I had planned. I injured my shoulder while delivering a baby, my clavicle dislocated and damaged the brachial plexus nerve. This injury finished my career as a midwife.  

I went through a period of deep depression, and I was in a level of pain that I had never experienced before. I was diagnosed with CRPS, complex regional pain syndrome and eventually after 10 months I was given some relief with a treatment for my shoulder. Sadly, it was too late to save my midwifery career. I believe I was dismissed with discrimination under the Equality Act, but I was not in a place to be fighting this at this point.  

I was able to do some work for a time after the loss of this career, but my health deteriorated to a point where I was unable to work at all a few years after this. I went through a major period of grief and depression due to the loss of my career. I felt like my self worth and identity was connected to the ability to work and do the job that I had trained so extensively to do.  

When I think about my life and how much loss and grief, I have experienced because of becoming chronically ill and disabled. I still find it pretty uncomfortable.  

I feel like I have lost so much; my career, my identity, my self worth; the ability to live in the way that I used to. I grieve the loss of friends; I feel grief when I see other people doing things that I am not able to do. I see people going running, and I have a pang of grief that I am not able to do this (not that I ever wanted to go running before!!). I see posts from my friends or others on social media and I grieve that I am unable to do the activities that they are doing. There are places in the world that I would really love to visit but they are not accessible for me, so I grieve not being able to have these experiences. 

It is not only these experiences but also that I have lost my status in society; as a disabled woman I do not have the same treatment as non-disabled people. When you meet someone new, they automatically ask “what is it that you do for a living”. This automatically makes people judge you and on occasions feel sorry for you. I am unable to access the world in the same way anymore. I must plan ahead wherever I go, and I am more disabled by society than I am by my own impairments. This manifests a level of grief of how my life used to be. Life used to be so much easier when I wasn’t disabled, or I should say didn’t realise that my body was struggling so much.  

I then look to the future. My symptoms and my health are not likely to improve over time. The dislocations are increasing, the pain is not getting any better, the fatigue is not getting any better.  If anything, my body systems are working less effectively as time goes on. I am already grieving for the life I am not going to get to live. It is likely that I am going to deteriorate further as time goes on. Therefore, the grief doesn’t ever stop. I grieve for the grandchildren that I won’t be able to help with fully. I grieve for the retirement that I won’t be able to embrace because I haven’t been able to make financial contributions.  

There is always a level of sadness and a low-level grief in the background for all the things that I am unable to do because of this life that I now lead being disabled by chronic illness.