If you go on my Instagram, you will see accumulated photos of a happy and healthy 24 year old. Some may even think I am luckier than most – with multiple pictures captured in different destinations. Traveling while you’re young resonates through many millennials’ DNA – whether it be for the partying or general experience, but that isn’t the case for me. There were mistakes in my genes. I trot off to see the world on the rare occasion I am well. Fearing one day it will be impossible.
Instagram tells one story and now I am ready to tell you another.
Differentiating my left from my right or retaining balance has never been easy. A simple task – walking down the street, (when I make it out of the house that is) — turns into a game of dodgems or a dance-off with a complete stranger as we try to pass one another. Each time, piercing eyes glare towards me. Sometimes a friendly one, like I am a lost tourist. Other times it’s a look of annoyance, alongside muttering. All I can do is apologize. After all I don’t look sick.
Concealed by clothes and a face caked on with makeup and long hair, how could I?
The Truth Behind the Makeup
As I stand naked I am confronted with an extremely different version of myself. I see a painting with various shades. Hues of red, green, black, blue and purple. All powerful colors, yet a battered body greets me, due to my lucid skin. A body that looks of one of self-harm or domestic violence. Panic flowing through my veins, that someone will catch a glimpse of this picture.
How do I explain that this is a body of Ehlers Danlos Sydrome III (Heds)? Even to G.P’S, which need it to be spelt as they open Google.
Denial: The Deadliest Form of Depression
Imagine that making a cup of tea is like running a marathon, or that any movement of your arms or legs makes clicking or crunching noises as your joints dislocate. Feeling like needles are traveling through your body, as fast as lightning. These are my day-to-day realities. An extreme case of pins and needles, I once convinced myself. Never connecting those feelings to the colored landscape that covered me. To other people, including GP’s I was just a hypochondriac — tired, accident prone and clumsy.
I purchased Tramadol in bulk online and took it a few times a day. It was a Catch 22. When I took it I would be dazed – half with it. However, if I didn’t take it, the pain would hit me harder within an hour and my awful mood would return…
Unsure, if I could survive a quarter of a century, something had to change
At the righteous age of 23, my head became too heavy for my neck and I was continuously dehydrated. Unable to work anymore, I couldn’t let some marriages last longer than my life. I convinced my family to pay for a private appointment with a leading rheumatologist, in basic terms a muscle doctor. I promised to stop whinging, if nothing came of it. At £300 per hour – it’s not hard to see why.
The appointment arrived one week later. Within twenty minutes I became the Cheshire cat out of Alice and Wonderland. A smile of relief. FINALLY I had a label, the answer I was searching for. Yet, that label led quickly to change in character. I saw red. Bitterness invaded my mind as I learnt there is no cure for EDS. Not to mention, I had been told, there may be more underlying medical problems associated with it like POTS.
The Ehlers Danlos Syndrome’s Evil Natures
I don’t take Tramadol anymore, because I want a clearer mind, which leads me onto my next point. With EDS, it is never a question of are you in pain, it’s a question of how much. Yet, the diagnoses are imperative for mine and other patients’ sanity. EDS is like God – some people can’t believe, what they can’t see.
The thing is – with an invisible illness you have the choice who you tell about the disability. Some patients view this as distorted blessing, a chance to be normal again. I know I do. From time to time I remain quiet about EDS to prevent being excluded from an activity. Unfortunately, this usually causes more damage. As I lay my crippled body flat, speculating when I will walk again; I find myself extending my blacklist instead of the bucket list.
This post is graciously contributed by Morgan, a 24-year-old Business Student at Oxford Brookes University diagnosed with Ehlers Danlos syndrome III at 23. Find her at brainsandbodiesblog.com.