Amber Vittoria

7 People With Less Visible Disabilities Talk Misconceptions and Stigma

“It’s always hurtful when I talk about my pain and people assume that I’m simply complaining.”

 
 

Some disabilities are more immediately apparent than others, particularly if the person uses an aid such as a wheelchair. Others, however, aren’t as obvious. The Invisible Disabilities Association defines invisible disability as “a physical, mental, or neurological condition that limits a person’s movements, sense, or activities that is invisible to the onlooker.” As a result, not only do people with invisible or less visible disabilities have to make day-to-day adjustments to exist in the world around them, but they must also navigate misconceptions about their condition —including the idea that they aren’t disabled “enough.”

Of course, there is no such thing as being disabled enough, and no disability is more or less important than another. But because society so heavily judges disabled people, Teen Vogue spoke to seven people about their less-visible disabilities and the common misconceptions they face.

LaLa Love, fibromyalgia and OCD

Fibromyalgia means that I usually get very stiff or freeze up in the mornings and throughout the day, so I have to get up very slowly. I also can’t stand on my feet for too long or else I get swollen feet or knees. This means that things like cooking can be very tedious and I have to use a stool to sit by the cooker. With regards to my OCD, I get quite severe intrusive thoughts and I do routines to keep myself sane and to potentially stop bad things from happening. I’m always paranoid that if I leave the house, I’ll be attacked, raped, or run over. So I use meditation to calm me down, but unfortunately, it isn’t a cure.

 

People often assume that I’m able-bodied. Even if I wear my “Please offer me a seat” Transport for London badge, my disability is completely overlooked. Being young definitely plays a part, plus I’m not visibly disabled.

Most days I spend in bed, in pain, and in tears. People don’t realize or even believe that you have an “invisible” disability, but that’s not my problem, it’s theirs. It’s devastatingly difficult, but I wipe my face and keep pushing because it gets easier.

Ellen, autism and bipolar disorder (type II)

Being autistic colors the way I see the world in almost every aspect, but because I didn’t get diagnosed till I was almost 19 (I’m now 20), I didn’t realize that all my life, I had been making adjustments for myself to survive.

I research everywhere before I go and use Google Maps and Street View to create a visual story. My headphones are noise-cancelling and really help, especially being in London, where I can get overwhelmed. Socializing uses up all of my energy, but it is also especially taxing when the environment is overwhelming. Sometimes I phrase things too bluntly or don’t understand tone of voice — I mean well, I just miscommunicate. In the past, I have gotten into difficulties where people thought I was being malicious. I couldn’t explain or even understand where I went wrong.

As for my bipolar disorder, I’m having weekly therapy and just started medication. I have to be very aware of my moods, and it can be hard knowing you are tipping into an episode or are in one. Money, relationships, academic studies, and taking on projects are all things I have to be aware of because they can be hugely affected by being depressed or hypomanic.

No one believes I am autistic, and no one believes I have bipolar disorder. Everyone is shocked, or I get dismissed as ‘Oh, well you must be high-functioning,’ which is a label that I find really ableist. Especially as someone who is largely deemed successful in my academic studies and career and who has gotten to a high-up point very young, most people can’t compute that I did that while disabled because, for them, their idea of disability is synonymous with failure, or an innate inability to achieve.

 

Sam, unilateral hearing loss

Day to day, I have to always keep people to my right (my “good side”), but it means that I sometimes miss out on parts of the conversation — I don’t want to make it awkward by stopping and asking. If I’m not wearing my hearing aids, then there’s the assumption that they’re not really that important or my condition isn’t that serious. This is particularly hard because it’s been a long battle with myself to get over my self-awareness when wearing them.

Having hearing loss in any degree, whether it be birth defect or an injury, is very hard to deal with. There are honestly days when you wake up and feel sorry for yourself. My advice to anyone in a similar situation is that it begins with acceptance. Not merely the acceptance of test results from a hospital, but the mental acceptance: being ready and willing to receive help from doctors and taking all support that’s available. For me, this took three years. Sometimes, I still fight myself.

Learning not to over-explain myself has been a big challenge. I used to think I didn’t care about others’ opinions until the first day I wore hearing aids at secondary school. What helped me through this was the understanding that the hearing impairment is not the main part of me. It doesn’t define me.

Danielle, type 1 diabetes

I’ve been a type 1 diabetic for 11 years, and [each day] I test my blood sugars six times and take insulin injections around eight times. People think I ‘ate loads of sugar,’ which made me diabetic — which is just completely untrue.

I feel like a fraud when people question my health. I know that I appear healthy, but I never feel 100% okay. There is always a part of me that isn’t right.

I’d advise others to ignore other people’s ignorance and always express your feelings without fear of judgement. Trust your instincts and remember that your health comes before someone else’s preconceived notions about disability.

Shakalia, Ehlers-Danlos syndrome

Ehlers-Danlos syndrome is a connective tissue disorder that causes joint hyper-mobility and chronic pain. As well as pain, I experience fatigue and brain fog after exercise and during long periods of standing and sitting. I try to fight through it with a combination of meditation, medication, breaks, and ensuring I have a comfortable seat, but that’s not always readily available.

Because I maintain an active social life and look relatively healthy, people assume I’m fine, or worse, that I don’t need a seat on the train. It’s always hurtful when I talk about my pain and people assume that I’m complaining, when in reality the pain I experience can sometimes be debilitating. I try hard to push through. It disappointments me because I know that if I could express the pain I experience on a daily basis, people would be shocked that I manage to even get up every day. In some sense it has made me mentally stronger, but it would be nice to be properly understood.

I would advise someone with my condition to be upfront about their daily struggles. In the past I’ve been secretive about my condition in fear that people will think I’m not capable, but doing that can result in you doing things that can be harmful to your body in the long run. Be honest with the people around you, and don’t be ashamed of your limitations.

Charlotte, depression and anxiety

I set at least 7 alarms (all 5 minutes apart) to ensure that I actually get up and have time to do my ‘morning routine’ and so that I’m not rushing about and getting worked up. If I have plans, whether it be work, university or just meeting up with friends, I have to make sure I set off at least an hour early in order to make sure I’m there in plenty of time, otherwise my anxiety is sky high.

I get a lot of people telling me that I’m ‘too happy’ or seem ‘too confident’ at work to have depression or anxiety and it’s not the case. It depends who I’m working with, what my mood/state of mind is and how individuals are treating me on that particular day. It is also down to me being used to an environment.

Sometimes I get concerned that people think I’m milking it or I’m attention seeking, so I tend to shy away from the subject. I mean… What does depressed even look like? What does anxiety even look like?

Miriam, Postural Orthostatic Tachycardia Syndrome (POTS) and hypermobility syndrome

Thrillingly, my autonomic nervous system (controls all your involuntary functions) is dysfunctional. The main problem is that when I stand up, gravity pulls blood down into my legs and feet instead of regulating my blood upwards to my heart and brain. The blood pools in my blood vessels, which are too stretchy because of hypermobility syndrome. This makes my heart beat very quickly and my blood pressure drop very low to get the blood pumping back up to my heart and brain, which makes me lightheaded, have palpitations, dizzy, fatigued, and, if I’m really lucky, faint.

Thankfully, I have amazingly supportive parents and have lived at home since graduating because I can’t earn enough currently to feed myself, let alone pay rent on my own place. My symptoms vary daily so I can need a lot of support one day and be pretty independent the next. Sometimes I can be out all day, sometimes I don’t have enough energy to lie down and read. Generally speaking, I need to be able to sit or lie down at any given moment, whatever I’m doing, and I have to factor in resting time before, during and after most activities, even walking around my house.

Strangers, acquaintances, and family members alike have judged me as lazy and dramatic and treated me as though my POTS doesn’t really exist, expecting me to act and think like a [non-disabled] person. I have friends who have asked me, “How much of your illness is in your head?” (Answer: My autonomic nervous system is located in my brain stem, so, most of it). I often get well-intentioned praise such as, “You never let your illness stop you!” or “I don’t see you as disabled!” When the reality is that I am disabled and my illness stops me doing a lot of things — I’m not in control of it. I do my best to work with the little energy I have, but stamping me as “not disabled” implies I don’t deserve help and adjustments.

source: www.teenvogue.com

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