Internalised ableism and inter-abled relationships.

Happy Disability Pride Month

When Jake and I first met we were 15 years old and as most 15 year olds believe, we thought we were invincible. Disabled? Nah, could never be me. That was something that happened to older people, to other people.

I started experiencing pain at 16 years old. This would turn out to be fibromyalgia, diagnosed almost 10 years later and 2 years into our marriage.

Jake didn’t knowingly marry a disabled person, because at the time I didn’t know I was disabled. I was undiagnosed autistic and ADHD and although I was struggling physically I didn’t have a name for what I was experiencing. This was made worse by the fact my chronic illness was ‘invisible’. From the outside I looked fine. I looked like a healthy, slim, young woman (this I believe is part of the reason it took so long for me to receive my fibromyalgia diagnosis).

But inside I was not fine. I was struggling everyday with chronic pain throughout my entire body, daily headaches that often turned into migraines, brain fog, crippling fatigue and more. They call it an invisible illness but if you really look carefully, my pain is not invisible. And as time has gone by this has become more true. I used to be able to mask my pain and fatigue much better (not that I should have had to), whereas now it has become more difficult to hide my discomfort. My disability has become ‘more visible’, particularly to my husband who sees me more than anyone.

Sometimes I feel like I am not the person Jake married. I’m no longer able to be spontaneous or hike mountains or socialise every weekend. At some point along the way we swapped romantic dinners out for flared up nights in. Instead of dancing in clubs, he was helping me shower. These changes are hard and they change the dynamic of a marriage. Sometimes I feel like a burden. Like Jake is my carer rather than my husband. Sometimes I feel like he deserves more and would be better off without me. And I often feel like I’m holding him back from living a life filled with adventure and spontaneity.

But then there are moments like this morning when he helped me shower and we were laughing about how he felt like he was watering the garden. A while back he washed my hair for the first time and although I thought it would feel like defeat, like me giving up, it was actually a really beautiful moment. There is something so tender and intimate and precious about these moments. Jake sees the most vulnerable side of me that I haven’t shown anyone else. This is our new normal as an inter-abled couple.

Thoughts that I am not good enough for Jake simply because I am disabled: thoughts that he should find someone better because I am holding him back, is internalised ableism. I have absorbed this belief from a society that tells us disabled people are less worthy. That we are less loveable and that we are a burden.

There are still (many) days where I think this - after all internalised ableism doesn’t disappear overnight - but at least now I can recognise it for what it is. Jake is not ‘a saint’ for being with me just because I am disabled, despite the way the world views inter-abled relationships. I have a lot to offer in our marriage and I am worthy of love.

Our marriage looks a lot different from what we thought it might but that doesn’t make it less than. I grieve for the person and life I would have if I wasn’t disabled, there is no denying that. But I also believe there is space to hold both these emotions. There is space for duality within inter-abled relationships and it can be both challenging and beautiful.

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Love Georgia x