I Think It’s Time I Stop Rejecting My Disability

Disability with Charlotte Paradise.

CW: mental health, imposter syndrome.

We all have our own identifier. You know, that sentence about yourself that’s at the top of your cover letter, your introduction at awkward Zoom meetings and the words in your Twitter or Bumble bio (along with your coffee order). But what happens when your identifier dramatically changes and how do you know it’s time to embrace it?

In 2014, my identifier changed from something like “university student and aspiring writer” to “chronically ill young woman”. One summer morning seven years ago, I woke up with what I thought was a flu. I expected that it would just take me a week or two to get over it but months later I was still pretty much entirely bed and housebound. I was diagnosed with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) a few months later. I went from being a healthy, able-bodied first year uni student, who had just celebrated her 20th birthday dancing in clubs and drinking pitchers of Woo Woo cocktails, to someone who couldn’t brush her own teeth. My head dizzy with grief and confusion, I couldn’t quite identify as “chronically ill” without the question mark.

After 5 years of perfectly normal medical test results, misdiagnoses and considerable physical limitations, in 2019 I began to identify as “an invisibly disabled woman”. The definition of disabled under the Equality Act of 2010 is ‘a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities’. Passing the 5 year mark of having exactly that, an impairment with significant impact on my physical abilities, the word disabled started to lose its dirtiness and in it, I found an acceptance for who I now am – a woman living in a disabled body.

Having said that, I still wasn’t convinced that I was “disabled enough” to be called a disabled person because of the often invisible nature of my condition. I have known people who have struggled with similar medical and business imposter syndrome: I’m not skinny enough to have an eating disorder or I’m not successful enough to say I’m an artist. I felt that my disability wasn’t visible enough, constant enough, or understood enough to be simply “disabled” so I tagged on the “invisibly”.

I met someone new recently and at some point in the conversation I mentioned that I was “invisibly disabled”. Their response was “well, yeah, I can see (or not see) the invisible part” and it got me thinking, “why do I say invisible when it’s often so obvious?” I think I’ve found the answer: gaslighting.

Today, I know that I have a genetic connective tissue disorder called hEDS (Hypermobile Ehlers-Danlos Syndrome), a heart condition called POTS (Postural Orthostatic Tachycardia Syndrome) and other diagnoses to go with them. Before I received these diagnoses, I had been gaslit a lot. A doctor had recommended that I use nasal spray to cure my extreme fatigue that would help me out of bed. Family members had suggested that I was being “lazy” or “spoilt” rather than actually sick. Friends had stonewalled me because they believed I’d decided not to go to their birthday party rather than actually being partially paralysed. In turn, I internalised this gaslighting (with the help of ableism that told me it’d be better to be able-bodied anyway).

I’ve been including “invisibly” in my identifier to be one step ahead of the rejection and disbelief I expect to be met with – the judging or confused look that says “really?!” or an actual out loud “really?!” But, in avoiding rejection from others, am I actually rejecting myself?

My disability isn’t actually always invisible; it’s just that when I meet new people (when I’m out on a “good day”), my disability is at its least visible. Over the last 6 months since my diagnoses, I’ve noticed just how visible my disability actually is. In physiotherapy, I learnt that my muscles are extremely deconditioned and I saw that blatantly when I tried to pull a lightweight resistance band. I struggled to grip it let alone stretch it without heavily shaking. The people close to me think my disability is visible because they see me limp, see my fingers swell and me not be able move my arms, or when I ask them to cut my pizza and open bottles in restaurants. My disability is visible in equal amounts (if not, significantly more) to when it’s invisible. I’m starting to understand that when I call myself “invisibly disabled”, maybe I’m actually lying, perhaps as much to myself as I am to others.

I don’t want to reject the part of my disability that is very much visible (even if it’s mostly behind closed doors) by identifying entirely as “invisibly disabled”. What’s my biggest fear? That people will deny my disability? Yes, people may share their rude, unnecessary, or uncomfortable opinions about me and my body (thanks ableism!), but do I need their belief? Maybe if I can shed my internalised imposter syndrome and dependence on other people’s acceptance, I can actually be free to fully accept my authentic self.

So, from today, I’m going to give it a go and start identifying without the “invisible”. Hey, I’m Charlotte Paradise and I’m disabled. There, I said it.

Image courtesy of Lil McDermaid.

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