5 Things Having an ‘Invisible’ Disability Has Taught Me
When most people hear the word disabled they think of wheelchairs or conditions such as autism. They don’t think about the woman chatting to them in the queue for the bus, seemingly able-bodied. An ‘invisible’ disability feels like something of an oxymoron. In wild imaginations it is as if the condition holding you hostage boasts an invisibility cloak straight out of Harry Potter. It’s nothing quite as glamorous as that.
Having an invisible disability means that often people don’t see what is wrong. Sometimes, for me at least, it feels like they don’t see you at all. This has taught me a few lessons that I may not have discovered so quickly otherwise.
- Life can be cruel
By the time they reach college most people will be aware of this fact of nature. It was something I had difficulty coming to terms with, because of the way my life changed so quickly.
When I was ten I had appalling co-ordination and managed to fall in the school playground. This is what I remember as the start of everything that followed. Soon afterwards I was at the Accident and Emergency department of my local hospital having X-rays, before being diagnosed with scoliosis.
Scoliosis affects around four per thousand children. Only some of those children will require spinal surgery, as I did.
I underwent a spinal fusion operation when I was eleven and the experience changed me. It felt as if my life changed in the blink of an eye. Learning to deal with how my life had changed since the operation was a large part of growing up for me, especially when I developed proximal junctional kyphosis above the correction.
2. Sometimes you have to laugh or else you’ll cry
For me, some of the most difficult moments have been when around people who do not know about my health problems. Before I had my spinal fusion I was noticeably disfigured, with my spine curving so much that my breathing was affected. The surgeons at my local hospital did a great job reducing the curve, with my spine fused from T3 to L4, but this severely limited my movement.
It is the little things that are the most upsetting. At my very traditional university formal meals are held twice a week, as well as in Freshers’ Week. Near the beginning of this year, before I had made lasting friendships, I attended one of the meals.
Picture the scene. Over a hundred people dressed in black gowns and formalwear and I’ve got the strap of my handbag draped over my knee to make sure it doesn’t fall. If it does, I won’t be able to pick it up without standing up (a no-go in the middle of the meal) or leaning sideways in the hope I can grab it.
At the end of the main course it falls and, as I need to retrieve it, I lean to the side and manage to pick it up off the floor. As my limited back movement means I can’t just bend forward I have to turn to the side and pick it up that way. My face was one inch away from ending up covered in gravy at that point!
Having to compensate by responding in slightly unusual ways to ordinary situations swiftly becomes embarrassing.
- Nothing makes you angry like jokes at your expense
In the world of entertainment there are few topics spared being the butt of jokes. In most situations however, jokes at the expense of those with disabilities are avoided.
For some reason though, scoliosis seems to be funny to a lot of people. Perhaps it is the fault of Victor Hugo for creating The Hunchback of Notre Dame, but it isn’t him I blame.
Jokes about ‘hunchbacks’ may seem funny to those who have never had the experience of having a severely curved spine but if you have, such comments can make you cry.
Comments on a well known British TV show about ‘hunchbacks’ about eighteen months ago were enough to make me cry, because the audience did not seem affected by the mocking of those who spend every day living in discomfort.
Although my spine is no longer noticeably curved, I am still greatly affected by the ignorance shown by many people towards conditions such as scoliosis.
When the body of Richard III was discovered in a car park I avoided media coverage in case offensive terms were used.
Attending a talk given by the man who discovered Richard III’s bones, who discussed the scoliosis found in matter of fact terms, showed me how easy it really is to be understanding.
- The Internet is truly wonderful
It is online that I have found people who understand what it is like to be affected by a condition in ways other people might not understand. Online groups providing support show that you aren’t alone.
The kyphosis resulting from my spinal fusion has left me often suffering from nausea caused by my neck pain. Below my right shoulder blade I also have a small lump, which sometimes surfaces, where one of the screws holding my spine in place is more noticeable.
Mentioning these small details to other people, especially those who are squeamish, can make them uncomfortable. For those online who have dealt with similar issues they are just a fact of life.
- Life can be kind
One of the moments in my first year at university I feel I will never forget is related to my health. The fact I have scoliosis, as well as some other symptoms, meant it had been suspected I may have a rather serious genetic condition. If that had been the case, it would have left me with some difficult decisions for the future, regarding whether I would have children etc.
Luckily, my test results came back negative. The relief when I was told was an indescribable feeling and has showed me that things can always be worse.
Seeing elderly men and women in the street who are stooped double by the often life long effects of their scoliosis makes my heart swell with gratitude for the medical advances that have allowed me to live an ordinary life.
If it wasn’t for modern medicine I don’t know where I’d be.