Dear person who left this note in my car,
Thanks for judging me when you don’t know me. What gives you the right to decide that I am not worthy of a disabled space?
I may look like a “normal” young woman but that’s because I try my best to fit into society and not let people know that I’m in pain. I’m not pretending to be sick, I’m pretending to be well.
I have numerous invisible health conditions. I have a rare genetic connective tissue disorder called Ehlers-Danlos Syndrome. This is a multi systematic condition and affects everything from my brain, my joints, my heart, my bones, gastrointestinal system, in fact there is very little that it doesn’t affect! I also have other invisible illnesses such as gastroparesis, dysautonomia, raynauds and many more. I don’t shout about these as I’d like to live my life as best as I can. These conditions vary massively from day to day. I have carers, district nurses, lots of hospital consultants and appointments. I shouldn’t even be explaining myself to someone who is so judgemental but I feel it is necessary to educate you and your small mind. Next time you see someone and think they don’t deserve a disabled spot then why not ask what’s wrong? I’d prefer to explain how my conditions affect me to your face rather than be left an anonymous note. I’ve had two surgeries in the past 8 weeks and numerous infections including a spinal one I am currently fighting so I think I’m allowed to park a few steps closer to the door thanks.
Please think before you judge someone. You have no idea what’s going on in people’s lives!
“Joint hypermobility syndrome is a common clinical entity which is much misunderstood, overlooked, misdiagnosed and mistreated. It was first described in the 1960s as a purely musculoskeletal condition due to joint laxity and hypermobility occurring in otherwise healthy individuals. Some four decades later it is now perceived to be a multi-systemic heritable disorder of connective tissue with manifestations occurring far beyond the confines of the locomotor system and with ramifications potentially affecting most, if not all, of the bodily systems in one way or another.
Most authorities in the field find it clinically indistinguishable from the Ehlers-Danlos syndrome – hypermobility type (formerly, EDS type III). In >50% of patients the diagnosis is delayed for ≥10 years. Failure to diagnose and treat the condition correctly results in needless pain and suffering and in many patients to a progressive decline in their quality of life and in some to a loss of independence.”
So I’ve just read Professor Grahame’s above journal and I actually have tears coming down my face. It is so strange to read something and just think “Wow, this describes exactly how I am, how I feel and what has happened to my body”. This has explained so much to me and if you haven’t read it I highly recommend that you do, in fact it would mean a lot to me if you could read and share this to help me in my journey to raise awareness. Professor Grahame is such a fantastic man and his work for those with EDS is just brilliant.
“To dismiss disparate symptoms as ‘illness behaviour’ is, in my view, wrong and does much disservice both to our patients and to our reputation as a profession.”
That just shows how much he genuinely wants to help those with EDS. Professor Grahame you are a wonderful gentleman and thank you so much for your research into EDS and fighting with us!
Hope you’re all having a pain free day.
Love & hugs, Charlie x