Written: December 2019
Imagine coming out of a long exam with painful cramps in your hand. Now imagine that pain intensifying and never going away.
According to DFL (2017), there are “13.3 million disabled people in the UK.” Within this number, there are a large group of people who suffer from a hidden disability.
With new schemes like the Sunflower Lanyard Scheme being created so those with hidden disabilities can go about their daily lives with more ease, there’s clearly been a surge in awareness.
But is this enough?
So the ultimate question was asked: what do people with hidden disabilities wish others understood?
Kamila Bojarska is 19 and studying Psychology at Kingston University. She was diagnosed with Fibromyalgia and Hypochondria in 2017.
“Fibromyalgia is a neurological disorder so the brain perceives pain as more than it is,” she explains; it’s something many haven’t heard of. “The condition is a type of hypersensitivity. My muscles never fully relax. For example, after a long day on my feet or if I have long exams, my muscles will cramp up."
Fibromyalgia sufferers also deal with chronic migraines, cluster headaches, irritable bowel syndrome and mind fog. Naturally, Kamila suffers depressive episodes, too.
However, having Fibromyalgia at her age is extremely rare, meaning Kamila has strict rules about her medication: she’s only allowed six tablets across two months as they’re incredibly addictive and very like to cause more health problems in the future.
Unfortunately, this is because there’s little research on Fibromyalgia and therefore it lacks awareness, too.
Des Quinn, a spokesman for charity Fibromyalgia Action UK, voices his concerns.
“This lack of awareness has meant the condition can be treated less seriously and the availability of treatments or research is less than it should be.”
“With the lack of recording of stats within the NHS, we have the condition being side-lined to a certain extent. If we had accurate recording of stats with respect to fibromyalgia, we would be better able to make decisions on the clinical needs within Clinical Commissioning Groups.”
“More support for Multidisciplinary Teams that bring multiple tools to the table for fibro patients in one project would be great. Having physiotherapy, Taiichi, pain clinic and Cognitive Behavioural Therapy packaged up in a service around the country would be helpful.”
Meg Lucy is in her third year of Kingston University studying Performing Arts. She has Schizophrenia and Dissociative Identity Disorder (DID).
“Usually they don’t coincide so it’s kind of hard to explain to people that you have both,” Meg explains. “They were trying to decide whether I had schizotypal or schizophrenia.”
She says the difference between the two is that schizotypal also comes with a personality disorder. However, DID is not a personality disorder because it’s usually a defence mechanism to childhood trauma.
It took Meg four years of misdiagnoses until she was correctly diagnosed. This is not uncommon.
“The ultimate goal for DID should be something called integration, where all the alters come back together inside of one,” Meg explains.
Although she has 16 alters, only five of them are active, each playing a “different role within the system”. Her main alter Percy is her protector and there’s also Nina, the “prosecutor”. Oliver is seven-years-old and there’s Tom, who she describes as a demon.
“He just looks like a demon, he can’t talk. He’s also an auditory and visual hallucination as well,” she clarifies.
So then, what is it that Kamila and Meg wish others understood about hidden disabilities?
“I just want people to understand that we’re trying. We’re not demons, it’s not scary,” Meg instantly responds.
After being severely bullied, Meg dropped out of University and applied to Kingston a year later.
“There was this whole hate page at my university and it was so immature but it happened. They said I make up my illness and because I’m doing performing arts, I’m a good actor.”
“They’d say stuff like, Percy threatened us…because I was saying that didn’t happen, they were like, how do you know?”
“But Percy and I have this bond because he’s been here since I was nine. I know when he’s lying. I can hear him and talk to him,” she explains. “He was so upset. He couldn’t understand why these people who were supposed to be my friends would do that.”
“They don’t see disabilities as a positive thing. They’re shunned almost,” Kamila says.
Despite how much society has progressed into being more open-minded and less stigmatising, there’s still a long way to go.
“There are good things that come with them too,” she explains “When people find out you have a disability, they see you as a disability rather than a person.”
If there really is more awareness, why do people still stereotype?
“If everyone just had some knowledge of disabilities, they would be able to include people with them in normal situations rather than excluding them just because they aren’t seen as ‘normal’.”
“What does a person with schizophrenia look like? There’s this stigma there. What, they walk through the streets with no shoes or clothes on and just yell?”
A part-timer at Pryzm, Meg describes how once a customer got angry because she lost her ticket with the number needed to find her coat on among the 600 odd handed in.
“She starts yelling at me and getting in my face and calling me racy words. Percy feels like I’m being attacked so I dissociate. He says to her you need to watch your tone. And she’s like, why are you speaking in a different accent? It’s because Percy’s American.”
“It’s getting better but I’m never going to escape the stigma.”
“Just because I don’t need a crutch, it doesn’t mean I don’t need that seat.”
As most people with hidden disabilities know, using public transport can be incredibly more difficult than it needs to be.
“That’s the thing with hidden disabilities. They don’t have physical obvious aspects so you don’t know who's got it around you and if they may need something,” Kamila continues.
Likewise, FMA’s Quinn also said: “Stories of “fit and healthy” looking fibro sufferers being harassed while parking in a disabled bay with their blue badge on display are not uncommon.”
You’ve probably heard this story a thousand times, yourself.
Hidden disabilities are so relevant today and you probably already know that from the thousands of news articles and videos about this very topic. However, hearing so much of the same thing can often mean you tune out.
Hopefully, reading this helped to remind you of just the little things to consider when out and about. Nobody expects anyone to suddenly know every detail of every condition but rather just a little more understanding.
But, if you only take one thing from this, then keep what Meg said in mind:
“I’m not a victim of this, it’s just a part of me.”
abby k lake