I’m Invisibly Disabled & The Return Of ‘Normal’ Life Terrifies Me

Photographed by Kristine Romano
Going to the washroom or taking a seat on the Tube was never something I expected to become scared of but using disabled services as a young person with an invisible illness has left me facing a lot of discrimination and abuse.
I have cystic fibrosis, a chronic illness which causes passageways in my lungs and digestive system to become blocked with thick, sticky mucus, leading to fatal lung damage. Despite my rigorous daily treatments, constant pain and shortened life expectancy, my disability remains invisible. 
In the past, people have yelled abuse at me for using the disabled toilets as I do not "look ill". They have looked me up and down and called me a liar because, to them, I appear healthy and too young to be disabled. 
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There have been countless other incidents where I have been told to give up my seat on the subway for an elderly passenger. People will mutter comments under their breath and shake their heads at me, and when I am feeling vulnerable, with my lungs aching and my pancreas in agony, I am too intimidated to stand up for myself. 
Now, after spending a year inside, shielding from the COVID-19 pandemic, the prospect of entering public spaces and starting to deal with this discrimination again is terrifying. 
The definition of a disability under the UK Equality Act 2010 is "a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities." This criteria clearly includes invisible disabilities but getting into trouble for using disabled services because you "look well" is a traumatic experience which many disabled people face. 
In 2019 the blue badge scheme — the government initiative which allows disabled people to park closer to their destination — was belatedly extended to those living with an invisible illness. This was the biggest change to the scheme in 50 years and sought to help people with disabilities not immediately apparent to the general public, including anxiety disorders or brain injury, get access to a blue badge for the first time.  
But at the start of 2021, a BBC investigation found that people with invisible disabilities face a "shocking disparity" when applying for a blue badge parking permit. Out of 109 councils which responded to the BBC's enquiries, eight out of 10 had higher approval rates for people with physical impairments. 
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Disability equality charity Scope said the study highlighted the discrimination and prejudice that invisibly disabled people continue to face. It is the reason I have been terrified to apply for a badge, despite being eligible, and why many of my disabled friends are scared to use the services they deserve and require. 
Other invisibly disabled people agree. Rachel Michaelson, 42, runs a mental health mindset business and has ME, fibromyalgia and Ehlers-Danlos syndrome. Pre-pandemic, Rachel had experienced abuse because of her hidden disabilities. She had been made to get her blue badge out of the car to prove it wasn't her gran's and has been shouted at when leaving disabled washrooms.
"People will challenge me about my badge, I've been called a lazy cow, I've been told I should stop using other people’s badges and park further away. One time an elderly couple had a go at me, then went into the store and reported me," Rachel explains. 
"Another time, a wheelchair user had a go at me after I had used the disabled toilet, saying that I was using a facility I blatantly didn't need to. But I do have to use disabled toilets as they are higher than standard toilets; if I use a standard toilet, my hips often decide to pop out on me which means I am effectively stuck on the loo." 
Things got so bad that Rachel stopped using disabled services for a while but eventually she had to give in. "People just need to stop being judgemental and the government needs to raise awareness around hidden disabilities. I love the fact that shops now put on their disabled toilets that not all disabilities are visible. Society just needs to be more aware and willing to learn about hidden disability." 
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According to a study by Scope, two in five disabled people with an invisible condition reported facing negative attitudes from others while using public transport, including receiving nasty looks, tuts and sighs, and being questioned about why they need support. This year, 18% say they have experienced negative attitudes about needing a reasonable adjustment during the pandemic, such as not having to queue. According to a 2017 study by disability insurance specialist Fish Insurance, 39% of people said someone who displayed a valid blue badge but did not appear to have any difficulty walking should not be entitled to use a disabled parking bay. 
Samantha Courtney Leathers, who has idiopathic scoliosis, PCOS (polycystic ovary syndrome) and osteopenia, struggles a lot with general pain, spasms and hyperflexibility in her joints. Despite this, she has faced a lot of discrimination when using disabled services.  
"Because of the nature of my disability, I'm often judged as being too young to use the resources I need in public. I often resort to just not using them and lying on the floor instead. When seating/support is available, the amount of adults that just see me as a disrespectful teenager is horrible," she says. 
Due to these experiences, she has started to avoid certain situations. "I don't go to [shopping centres], I'll walk around the grocery store until the queue by the cashier is shorter. I've adapted and I try not to use disabled services even when they are present." 
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For Samantha, change doesn’t need to come from government protocols but rather through greater public awareness. "It's just the ignorance of the general public," she explains. "True disability acceptance starts by actually knowing disability exists and learning about it in school." 
Jane Green is an educationalist and adviser on autism, Ehlers-Danlos syndromes and hypermobility, and has hypermobile Ehlers-Danlos syndromes (hEDS).  
Her legs can be in agony from myalgia pain, swollen joints, skin rashes and chronic fatigue but getting a priority seat on public transport prior to the pandemic was extremely challenging. 
"I do not like looking different or set apart so I prefer not to wear identification that singles me out. Being autistic also increases my lack of verbal communication so at times of stress I tend to become mute," she explains. "So either I would have to get out my folding walking stick, so others could see my disability, or I would just suffer in silence. Sometimes I even collapsed." 
The stress and anxiety that Jane has experienced when using these services has led her to develop PTSD. "My difficulties are in airports and trains. Unless society understands invisible illness and disabilities, things will not change." 
She hopes that with the pandemic moving more things online, society may improve. "I hope post-COVID we will have learned a lot about working and communicating remotely and that will benefit those with both visible and invisible disabilities." She continues: "There needs to be authentic co-production and sharing power by the government to understand our needs and wants for equal opportunity to travel and live. Supports need to be personalized." 
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James Taylor, Scope's executive director of strategy, impact and social change, says the pandemic has served to highlight the need for better understanding of hidden disabilities. "We’ve heard from disabled people who’ve been questioned about why they’re not wearing a mask, despite being exempt." He continues: "We urge the public to be compassionate and supportive, and not jump to conclusions about what support or adjustments someone needs." 
Looking ahead to my second COVID-19 vaccine, I hope to see more accessibility and understanding for disabled people. As we return to normal life, I want to rid myself of the guilt and shame I feel using disabled services, and finally get my blue badge. 
This story was originally published on Refinery29 UK.

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