Chronic illness -my story

Hi everyone,

I wanted my first post to be a little bit about me and start with explaining my conditions and what they mean for me in day to day life. I am currently 20 years old and have been diagnosed with 3 chronic illnesses for 2 years now and registered disabled for 10 months.

I look very much like a “normal” person, this means that you can then become subjected to a lot of judgemental looks and comments and people going out of their way to make you feel uncomfortable (this in turn means anxiety and depression can creep up on you quite quickly)

My 3 conditions are Joint Hypermobility Syndrome, Fibromyalgia and Ehlers Danlos Syndrome type 3. Now you’re probably sat reading this thinking “how on earth do you pronounce these things” and also “what on earth are they”.

So let’s start with the Joint Hypermobility Syndrome this is a “normal” thing that most people will have as it is known as being double jointed this means that the joint in your body over extend and can lock and move in places they shouldn’t. It becomes a Syndrome when you have the chronic pain that comes along with it. This is mainly focused in the joints and makes things a lot more difficult to do in daily life. I was diagnosed with this in April of 2015 and just handed and leaflet and told to get on with it basically, and that it wouldn’t really effect me in my daily life.

Then came the Fibromyalgia and the Elhers Danlos Syndrome a year later, this was only diagnosed due to me fighting for a second opinion as it was believed there was more wrong with me than first expected. So Fibromyalgia is an interesting illness to have as it is mainly chronic fatigue and over sensitivity in the skin, for example if someone were to rub my back for a long period of time to console me it would feel as though my skin is burning.

Elhers Danlos Syndrome is where your all of the above combined really but treated as a separate condition, this now means that when I walk I dislocate my hip partially and it means that my joints are more prone to dislocations than others.

Sorry if this has been really rambly but that’s the short version of all the conditions I have! I promise the next post will be something a bit more exciting about my recent trip to Brighton and how I coped with that and my conditions.

Signing off for now,

Scarlett

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