I decided to write this after reading a post by someone on a mums group. Not a disability-related group, but generally a lovely supportive group of mums. A post was written by other mum who had recently been diagnosed with a chronic health condition. She seemed to feel totally bereft and unsure how to move forward. The comments given were either similar to the original poster, or displayed solidarity but lacked the first-hand knowledge to make them really helpful and insightful.
Internalisation is an issue!
I’ve been asked how I cope with the conditions I have and the limitations my body creates a lot! I always struggle with this concept that it’s my body that is wrong or broken. The internalisation of a diagnosis is part of the issue. I am not solely my conditions. I am a person. Yes, I am a disabled person, I am a wheelchair user. But the limitations are not of my bodies making they are of societies making. My body is different, the connective tissues and nervous system work differently to the typical body. But that doesn’t make me wrong or broken! A wheelchair allows me to get around, instead of my legs. Adaptations allow me to drive. If all buildings were accessible, I’d have a very similar experience to an able-bodied person. Yes, this all harks back to the age-old medical vs social model of disability. I firmly believe that the medical model only hurts us more. Whereas the social model aims to give us equity with non-disabled people.
In the immediate aftermath of a diagnosis, you have to allow yourself time to grieve. Change can be difficult for anyone, especially when it doesn’t always seem like a good outlook. When I first given one of the many diagnoses I got before EDS, I was told that treatment wasn’t often effective. Many with that condition experienced ongoing chronic pain for many years. Yes, there were medications I could try, physio, pain management techniques, but everything I was taught was of little help. I crumbled.
Being 21 and fresh out of uni, it was all a big shock. I went from running every weekend, doing jujitsu 3 times a week, cycling and walking everywhere, to struggling to walk to the bus stop outside my house and living in constant pain. Suddenly, I had to factor in periods of bed rest, pain meds, physio, walking aids. I wanted to be clubbing, travelling the world, carving out a career for myself not surviving on state help because my pain and energy levels caused me to collapse on a regular basis. Maintaining a regular job just wasn’t possible.
Mixed feelings About Chronic Illness and Disability
Part of the issue was how long it took to get a diagnosis and how many misdiagnoses I had. Even if I’d had a much swifter process, the doctors seemed to forget the emotional implications of a diagnosis. It’s been recognised as crucial in cancer care but is still brushed over in chronic illness management. When I finally got the EDS diagnosis (by chance, after a review with a pain clinic after moving to a new area), at first I was elated. I had suspected it for years, but I’d supposedly had ruled out by a rheumatologist previously. The same one who said I was hypermobile, but that EDS and hypermobility weren’t linked…hmmm! It joined up a lot of my “random and unconnected” symptoms and made more sense than any previous diagnosis. But the genetic nature of the condition did make me a bit worried about the future for me and my family. The answer to that one is we just don’t know, but as I don’t have the vascular form, many of the more worrying symptoms are less likely to be an issue. As I’ve learnt to take each day as it comes, future worries seem less heavy on my mind than the here and now.
Have a Game Plan
I’ve been living with chronic illness and disability for 7 years now. Of course, when I first started to realise what I was experiencing wasn’t normal for a 21-year-old, I used to get angry with myself. Mainly for my lack of energy, at missing out on things due to my health or the lack of accessibility. Learning strategies such as pacing have really helped me with dealing with some of these issues. Not taking it all personally helps too! A venue’s choice to not make themselves accessible isn’t my personal responsibility. Especially if I complain about it and ask them to make changes, and they don’t adhere to the law!
Learning to say no more often also helped. As has saying yes to offers of support (when and where appropriate). Another thing that has really helped is organising large parts of my life. Simple measures are a great place to start. Such as filing, digitising and backing up all my documents. Using a digital calendar and making sure its shared with the people who help me out. Getting my family to batch cook and freezing it. Lists for all events, a ready packed hospital bag for emergency admissions. I could go on, but if I can organise it, it means that others can pick up the slack for me during flare-ups so I don’t need to worry about my household falling apart around me. Decluttering has also helped, but it’s a slow process. We’re currently in the middle of a big clear out as we are not only preparing for the arrival of our baby girl, but also for major adaptations to be installed.
You don’t need to be superhuman! You need to be you, even if that’s not the you that you dreamt of, that’s ok!