No one knows this about me but I live with an invisible illness
No one truly knows or understands what another person may be going through either mentally or physically just from one glance. We are all human beings with our own agendas, going about our day to day lives perhaps carrying baggage that others don’t even see weighing down our shoulders. We can never really judge what a person is going through based on a first glance- so we should be mindful and look out for each other.
One thing that people will never know about me unless I notify them verbally is the fact that I suffer from a genetic connective tissue disorder called Ehlers Danlos Syndrome type 3, that I was diagnosed with aged eighteen after years and years of unexplained pain. It is probably the most misunderstood and varying condition out there and by the phrase ‘connective tissue’ you can understand that it affects almost everything to do with the body, as it is a defect in the protein collagen. This is ultimately the glue that holds us together. My skin is stretchy and will bruise easily, my joints are hypermobile; clicking and dislocating easily, and the pain I feel generally makes me feel like a ninety-year-old woman at times. As a result of all this I can feel tired easily as standing and sitting for prolonged periods is a struggle. Feeling faint and cold is another thing I have to deal with. The sad thing is, for me this condition isn’t visible, and people would never give their seat up for me on a long train journey if I was having a particularly difficult day; and that’s what people find hard to understand.
You don’t use a wheelchair, so you must be capable of standing still for this busy forty-minute train journey; you’re a young woman after all!
I wish I could state my condition to someone and they just automatically understood without me having to recite a small essay about how I may be affected by something. Other invisible conditions such as diabetes have such a greater awareness and people, to an extent, will recognize your needs a bit more than if I were to say, ‘I think my hip has just gone out’ and then proceed to explain why. It’s very exhausting.
I try to stay as physically active as I can despite the pain, as I want to do everything that everyone else can do to stay fit, and being flexible has its added bonuses when it comes to my dancing hobbies. Being inactive and putting on weight would cause me so much more grief and I’d end up in a vicious cycle of pain and not being able to do anything about it. As my physiotherapist once said to me ‘quitting every activity like you have, due to pain, is only going to make it worse if you attempt to try exercising regularly again’. So, I took up all that I had once quit and avoided contact sports to stay mobile and active. Fortunately for me, I am not confined to a wheelchair like a few others with my condition; and that I am very grateful for.
Few programmes on TV have done a wonderful job of spreading awareness of this condition, with the character Izzy on Coronation Street being a sufferer of EDS and the actress herself. They have shown how it may be a struggle for certain sufferers to be able to healthily carry a baby themselves, and the controversial use of marijuana for medicinal purposes. This Morning have covered real life stories of couples having their baby taken away from them as they were suspected of child abuse due to the easy bruising of skin in some cases. All of which is very sad and tragic. The recent BBC News story about a couple who lost three of their teenage children to Vascular Ehlers Danlos Syndrome is without a doubt the most heart-breaking. After being misdiagnosed with sudden death syndrome, it was genetic testing that led them to discover it was Vascular EDS that had caused the children’s early and unexpected deaths. VEDS is the rarest and probably most horrific type of EDS as it affects the vital organs ability to function so much more than any other type.
An interesting early symptom of EDS is being late at learning to walk. Certainly not learning how to walk until the age of two, my mum was suspicious. But I aced walking shortly after, and was able to run away and cause mischief on two feet as soon as I could.
Despite everything I know that this is just one of those problems that I have learnt to deal with, and everyone has their own problems affecting them. I’m just an ordinary gal who sometimes feels one-hundred years old. But this has certainly made me much more aware of others possible needs and I know that it could be so much worse. So I aim to live life to the fullest.
