I've been M.I.A from the blogosphere for a while now, but I've returned, and I would love it if you would all share this one as far and wide as possible! (URL: http://jesshaseds.blogspot.com/2014/07/how-being-diagnosed-with-disability.html )
This post was inspired by the body shaming media, and all the women (and men!) who suffer from body image problems of all types. So, without further ado, this is my story.
-Jess
We all are taught from a young age that being stick thin and flawless is the ideal body type. We endure brainwashing at the hands of the media, who airbrush and photoshop flaws away. I was one of those insecure teenagers, some years ago, who longed to look like the models in magazines. Instead I looked in the mirror to see a 5' 3.5" chubby girl that I was sure no boy would be interested in. This is the story of how I overcame the insecurities I had about my body thanks to an incredibly unlikely way: by being diagnosed with a devastating genetic disorder and enduring treatment for many secondary problems.
When people hear the word "disability" a certain picture comes to mind. Everyone has a stereotypical view of disabled people as a whole, but we are all very different. Some people are born with disabilities, others are injured, and some of us were even as close as one can come to "normal" as possible, up until a diagnosis changed our lives. I am from the latter category.
Born in the Midwest in the late '80s, I was perfectly healthy. I suffered frequent ear infections & strep throat (what young child doesn't?), and was a bit of a late walker, but I was your average kid. We were broke but that wasn't a huge issue in my life. As I grew, learned to read and watched television, I became aware of what was considered the "perfect" body. By the time I reached middle school, I was incessantly bullied for looking and behaving outside of the norm. I was called ugly, fat, and pretty much every other insult in the book. Things only got worse as I got older. Then, just after my 16th birthday, my world stopped.
I was at an appointment with an Orthopaedist, and while waiting I began absentmindedly playing with my hands. My favourite fiddly trick was to pull my thumb down to touch my forearm. When the doctor finally came in, he saw me playing with my hands, and asked me to do the thumb trick again. He told my mother that she should take me to a geneticist, as he suspected I had something more going on. That's how I came to the day the world stopped turning.
As I sat with my mum in the geneticist's office, she told me that she would need to have me do a few tasks. She ran me through the Beighton Score, as part of the larger Brighton Criteria. I scored a 9/9, indicating that my joints were incredibly hypermobile. At the end of my appointment, I was given the news: I had a condition called Ehlers-Danlos Syndrome, Hypermobility Type (a.k.a. Type 3). It was genetic, and I likely inherited it from my mother. When we got home, we both researched the condition. Only then did I understand how the diagnosis would impact my life. It opened a huge can of worms. For years I would see doctors, GPs, and Specialists on a nearly bi-weekly basis.
EDS was not my only diagnosis. I had many other medical problems that had been overlooked or ignored, and some of them were severe. That December, I had my first major surgery, a mandibular advancement, to correct a short lower jaw. While the surgery itself was uneventful, the post-op was a horrible, life threatening mess. I had a terrible reaction to the anaesthetic, resulting in the frantic paging of my doctor and anaesthesiologist over the intercom, and my mother being brought to my bedside in recovery.
After they managed to get me stabilized, I was transferred to a room for my overnight stay. I hoped that would be the only issue, but it was not long after that I realised I was unable to pee, a complication known as postoperative urinary retention. This required the placement of a foley catheter, a procedure that requires you to spread your legs while betadine is used to cleanse the area before a thin plastic tube is inserted into the urethra and up into the bladder. Being a teenager, I was self-concious about having to do such a thing. Strangers looking at your vagina is something very few, if any, teenage girls would be comfortable with.
I had four more major surgeries after that, with postoperative urinary retention every time. Two of those surgeries had me in the hospital for nearly a week each, which led to more awkward and uncomfortable body moments. Catheter checks, bedside commodes, and a shower with a nurse present were some of the more memorable. Little did I know that the embarrassment I was suffering then would lead to an overhaul of my self image. When you have doctors, med students, and nurses checking on you every hour for 5 days, you get used to it.
After those 4 major surgeries, as well as countless other exams and echocardiograms, I found that I no longer hesitated or felt embarrassed by doctors and nurses examining me. I realised that I had become comfortable in my own skin. I no longer looked at models in magazines as the ideal. Sure, I had cellulite, stretch marks, scars, and fat, but those didn't matter anymore. I was just happy to be breathing, living. My life has changed considerably since my diagnosis, as I am now disabled and find it hard to function on a daily basis, but I'm still alive. It's no longer a crisis that I'm a little chubby. I have embraced every inch of my body as a part of who I am, and that there are far more important things in life than being skinny.
So there you have it, ladies and gentlemen. The media will try to tell you that you have to be skinny and flawless to be beautiful, but you're already beautiful because you are alive, and life is beautiful. We all have flaws, from the regular folk to the celebrities, no one is perfect, regardless of what the media tries to tell you. So go makeup free, wear a bikini, wear your scars like badges of honour from the battle that is life. Whether you're skinny, fat, or in between, you are gorgeous as long as you are living your life, and no one can take that from you. Step outside your body image comfort zone, breathe deep, look in that mirror, and tell yourself you are one of a kind, and that there will never be another you, and that you're happy in your skin because of it!
Share the body positivity, complement someone who looks like they're having a rough day. Help the younger crowd by teaching or showing them that the media alters reality to show you what they think women should look like, the ideal body. There is no such thing, because we are all unique! Oh, and just in case you think you're unattractive, just remember: we all have different tastes in regards to body type, and so-called "fat" and "ugly" people are just as likely to find someone who loves them just the way they are, and more so if you've got self confidence!
Keep your heads held high, you're beautiful!
