Invisible illness VS the general public

Hi Everyone, 
Hope you are doing well, I would like to start this blog by thanking everyone that has read my blog and has supported me so far. I have never really been one to talk about all of my health conditions publicly, I have always been seen as the person that is strong for everyone else and will put my problems behind me to help others. 

So far this has really been helping me towards releasing my emotions instead of bottling them up and then having my weekly Sunday night break down. Today’s blog post is about the wonders of the general public when it comes to invisible illnesses and disabilities (again I am not stereotyping all people just sharing my experiences). 

There have been many times in the past few months where people have managed to shock me beyond words. The first of which was when I had popped into town with Ross for a little while, and because I have a blue badge I am entitled to park in a disabled bay. However one lady clearly thought otherwise, as I got out of my car I had noticed her in my main mirror, she had purposely stopped behind my car to glare at me through her window. I turned to Ross and said have you noticed that lady, I thought it was quite rude to be completely honest, then what she did next made it 10x worse…as me and Ross went to walk past her car she rolled down her window and started to shake her head at me and tut. 

I am completely one for not prejudging people as I know what it feels like to be prejudged by everyone that looks at me, I used to hear people muttering under their breath about me using crutches to walk. Many people have said it was an attention seeking thing, in fact when I was in secondary school I used to get called a liar everyday when I would be taking my nurofen like they were sweets. 

I had another instance when I went to look at beds on Saturday (something I have now realised is not a 5 minute thing for someone with mobility problems…the memory foam ones literally eat me…it would take me an hour to get out of bed to get to work). So anyway, this man in the bed shop was showing me a lovely electronic mattress lifting bed with storage underneath (loved it but way above my price point) So he then went on to say that you can get the beds that you manually lift up, I looked at my friend and just said yeah that wouldn’t be any good for me (I’ve been told I shouldn’t even be lifting a full kettle of water let alone a double/king size mattress on my own). Now he would just not stop telling me that I would cope with it, this left me having to explain myself to a random stranger who did not need to know about my personal life. I recently came across a post on social media in which someone had written a really unkind note and placed it on a car windscreen, she had prejudged someone for using a blue badge and had assumed that she was using someone else’s blue badge because she “looked” perfectly healthy. 

The above types of things go along with the types of things that you should not say to a pregnant lady, it is really important that you think before you speak, for someone like me who struggles with anxiety as well as all of my other conditions my self esteem is very low. Something that you say to someone could cause lasting damage, you may think it’s a laugh or a joke at the time like I will nine out of ten times laugh off a rude or ignorant comment if it is said to my face…this doesn’t mean it doesn’t effect me and the way that I think about things in the long run.

If you take one thing from all of my posts, I would want it to be that people take more time and care before judging someone. And most importantly think before you speak, this is something that is taught from a young age in school and is something that should be instilled in our brains but sadly this can not be said for everyone. 

Don’t get me wrong most of the people that I have met and spoken to about my problems have been very understanding but this is after you sit for half an hour and explain everything in detail and I am thankful that I have the opportunity to educate people about all of this as it is not something that is openly talked about normally. 

Anyway I am going to sign off here, I hope you have enjoyed this post. Please go ahead and share it with your friends and let me know what you think! If you want to follow me on social then my user names are listed in my about page. 
Signing off for now
Scarlett x

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