I have an invisible disability, but I feel guilty using disabled spaces

‘You don’t belong here.’

That’s what I convince myself other people think when I’m occupying disabled spaces in public.

Whether it’s sitting in a priority seat near the toilets on a train, or accessing the support I’m provided through my university, I battle imposter syndrome daily as I try to navigate life with a long-term illness.

Aged just 21, I am in a chemical menopause as a result of my condition. 

I suffer with chronic pain, endometriosis, bladder issues, and a number of other symptoms – such as chronic fatigue, migraines, painful bladder and bowel movements, constant bloating, and I am currently being investigated for adenomyosis. Last year, this saw me have to claim help from the DSA – a disability scheme to support students with long-term conditions and disabilities.

After checking all the boxes, and meeting all the requirements that render me ‘unwell enough’ to access this help, I still feel an overwhelming sense of guilt.

Guilt that, as someone who is high-functioning and productive, I receive this assistance. I feel perhaps I am being ‘dramatic’, even though my medical records show as clear as day that this is not the reality.

Because the condition that causes me such pain is not immediately visible to others, I worry that I am not worthy of the disability aid I receive.

All of my life, I had the perception that being disabled meant missing a limb, being a wheelchair user, or having a physically visible impairment. 

But where does this leave me when my chronic, constant, and often unbearable condition is not apparent to the naked eye?

My status as someone with an invisible disability leaves me feeling stuck, floating aimlessly in the middle ground of ability identity – I feel too unwell to be able-bodied, but I fear there’s a perception that I look too well to be disabled.

I have never actually been confronted about the legitimacy of my condition. Yet, the eyes of strangers in public spaces often say enough. When disability has looked such a specific way for so long in media, television, advertisements, and so forth – namely the stereotypical stock character of an often comic wheelchair user – it’s almost inevitable that people would raise their eyebrows at someone who, from the outside, looks healthy.

My condition impacts me on a daily basis. My routines are navigated around my medication times, pain relief, and making sure that I’m never too far from a bathroom. 

Hidden illnesses and disabilities are consistently overlooked and dismissed within a society that is nondisabled by default

Whether it’s worrying about daily tasks, such as productivity, pain management, and maintaining my relationships, or bigger issues such as my fertility, the spread of my disease or what my long-term plans for treatment will be, my condition is always on my mind.

Accepting disability is more than just being comfortable with a label, I feel constantly unsure of myself, agonising over which box to tick on forms and considering whether to try and get on with the things employers and academics expect of able-bodied people, rather than recognising my own limitations.

My condition is unpredictable, with flare ups of my symptoms triggered by anything and everything. 

I can avoid alcohol, drink enough water, eat the right foods, and stay on top of all of my medications – but will still find myself crippled by bladder pain and urinary issues for days at a time.

And that’s before I mention the pain and fatigue – whether I’m going to be able to work through my pain is something I can never predict in advance. 

Declaring my condition to the DSA and my university has helped me massively, giving me more flexibility with deadlines, more understanding and support from my tutors, and my grades are improving as a result. 

However, despite the support I now receive, I can’t shake the feeling that there is someone out there more deserving than me.

I continue to overwork, to dismiss my body’s needs, and try to force myself to keep up with able-bodied students, because I struggle to accept that I’m not able-bodied myself.

Even the term ‘disabled’ feels like a word, or an identity, that I cannot claim as my own.

Hidden illnesses and disabilities are consistently overlooked and dismissed within a society that is nondisabled by default, leaving the people they impact behind, having to figure things out for themselves.

I am tired of feeling that I need to prove to others that I am struggling, that my body has boundaries and limitations that others’ don’t, and feeling unable to articulate the reality of my condition. 

Societal narratives and perceptions of disability have continuously promoted set ways of ‘looking’ or ‘being’ disabled. This is often from the able-bodied viewpoint, such as Sex Education’s Isaac Goodwin – disability in media is almost always synonymous with wheelchairs – to such an extent that people with chronic conditions can feel alienated from it.

There is no right or wrong way to be disabled, and it is incredibly important that we see more variation in the representation of people with disabilities, chronic conditions and hidden illnesses. 

I believe my insecurities about my health and ability are likely a result of a lifetime of medical gaslighting – doctors telling me that my pain and symptoms were ‘a normal part of being a woman’ rather than being caused by cysts and endometriosis.

I don’t want people like me to feel alienated, confused and alone – and I’m trying to move past the sensation of not being adequately disabled.

There’s a lot of work for society to do, but I know acceptance is the first step.

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