Hello friends, I hope today has been kind to y’all – firstly I want to thank everyone for the huge wave of support I’ve been receiving upon my return to creating content surrounding disability advocacy, and mental health awareness. It means so much to me to have the support from my communities, and to produce the type of content I seek as someone who still struggles with navigating internalised ableism.
However, I am aware that the vast majority of people who have been actively engaging with my content, are involved in the chronic illness/disabled community – and like every single disabled/less abled person I’ve had the pleasure of talking with, I have experienced difficulties navigating interabled friendships and relationships in the past, purely because of the lack of understanding, and societal ableism which resides in those who haven’t had personal experience with disability prior to the friendship.
Yet I’m also aware that the reactions people receive are partly based on when the friendship began and how the condition has displayed overtime. For example, I speak as someone who has a genetic condition, but it didn’t predominantly affect my life until aged 13, therefore the few friends I had at the time saw me as someone they perceived as able bodied, almost ‘transform’ into someone who was deteriorating, but remained ambulatory up until age 17/18. The experiences of those who have been disabled since birth are different to those whose disability was acquired, and I want to acknowledge this as I can only speak from personal experience when discussing how I have navigated situations.
But first, some quick background…
I have numerous coexisting conditions, Ehlers Danlos Syndrome (EDS), ME/CFS, postural orthostatic tachycardia syndrome (PoTS), scoliosis, arthritis, hip dysplasia, and suspected mast cell activation syndrome (MCAS). Not much(!)
Ehlers Danlos Syndrome is a genetic condition, so although I possessed the genes at birth, it wasn’t until puberty that the majority of the signs presented that I was hypermobile, and experienced chronic pain. At first we believed I was hypermobile and had fibromyalgia – and even though there is some overlap with fibromyalgia pain, and EDS pain – subluxations and dislocations are not related to fibromyalgia. When we brought up the idea that we suspected this had been overlooked, and my skin was characteristic of EDS, it was dismissed immediately by the paediatric rheumatology department – “impossible” was the word they used.
It was just one of the many instances of gaslighting I experienced in response to me seeking support for my condition. When you’re met with such behaviour in response to simply expressing how you’re feeling – and in doing so, presenting that vulnerability, it stings and their words and responses stay with you for years. When this is repeated across many years, you may begin to second guess yourself. I’ve subluxated joints before, and the words of those who refused to acknowledge my suffering kept me from seeking appropriate medical attention, or from expressing that I was in a lot of pain.
These experiences are felt throughout a community, and they certainly don’t start and end within medicine – it’s an issue rooted in societal ableism, the dismissal, and unconscious disregard to acknowledge, and accommodate disabled folx.
Which is why it’s so important to support your friend as much as possible.
Ways to be an ally
- Trust your friend and the experiences of other disabled folx
- Understand that these conditions are difficult for your friend to understand and explain, nevermind yourself, and that it isn’t about your friend getting ‘better’, but being there for them regardless of how their condition progresses.
- Stay present and communicate
- Your friend is likely going to be scared that they’ll lose people because they aren’t able to do things they used to, that people will think they’re boring, or try and conceal the severity of their symptoms because of the fear of being a burden on others. So communicate that they are not a burden, and never will be – that you enjoy their company and this won’t change because you aren’t able to do everything they used to.
- Adapt and include
- If you are planning on going somewhere with others, invite your friend – they can always say no, but it could come across as you excluding them because their condition would ‘get in the way’. If the activity can in any way be adapted or swapped for something as fun which your friend would like to be involved in, this is always a positive and supportive way to be an ally – as the world is largely inaccessible to disabled folx because of these barriers.
- Educate yourself
- There are plenty of disabled educators who discuss the difficulties the disabled community face because of societal ableism, ways we can expand conversations to diversify the target audience, and include those in the disabled community who are typically excluded, or treated as an afterthought in different conversations – such as accessing housing and employment, the importance of independence, sex positivity, and dating and relationships.
Below I have attached some digital artwork you can share on social media to help spread the word.