1)
Being told “You don’t look unwell”
Probably the main problem with
hypermobility syndrome is that unless you are in a sling, on crutches or in a
wheelchair, you probably look like you are physically fine. Even when people
mean well, being told you look fine when you feel the complete opposite is
probably the most frustrating comment. It should be socially acceptable to
shout ‘IT’S AN INVISIBLE ILLNESS’ directly at people who assess you entirely on
how you look. Or just hold up a sign when the shouting gets old.
2)
Informing doctors what hypermobility syndrome is
and that you aren’t imagining it
I've heard many stories and read accounts
of lots of sufferer’s health care since starting this blog. A common grievance
that comes up time and time again is that you have to continually explain to a
string of doctors, sometimes even specialists, what your condition is. Those
with Ehlers Danlos will often hear doctors say they've ‘heard of it’ but will
then realise that’s where the knowledge ends. I've had this problem myself many
times and have even had my GP giggle delightedly at my ‘backwards’ arm and tell
me what a great party trick it is. Er, that’s wonderful, but please refer me to
someone to stop the pain yeah? Someone who CAN ACTUALLY help please!
3)
Suddenly putting a join out and realising you
need help
I was once walking home, in the cold and
dark, from visiting family when my hip came out for the first time. I had no
idea then that I had any sort of condition, let alone that I was hypermobile. I
had to call my parents for help and explain I needed a lift home because I
literally couldn't walk. The only thing that showed up on the x-ray was some
swelling, which was never followed up. This happened again recently when I was
at work in a busy diabetes clinic and had to stop in the middle of seeing a
patient to say ‘You’ll have to excuse me, but my hip is out of place.’ It’s not
ideal. It’s also quite hard to approach someone in public to help you as they
will most likely look at you like you’re an alien and bemusedly lead to you to
a bench. It’s also always fun and games
when you wake up having knocked something out of place in your sleep and
explain to your friends while you are laying on the floor, then ask them to
brush your hair for you.
4)
Doing everyday household tasks
An obvious one, but this is so unbelievably
annoying. My shoulders are my worst behaved joints and on bad days basically
all normal daily tasks become a massive pain (literally) in the neck.
Hoovering? No. Changing the bed? No. Washing your hair? No. Peeling vegetables?
No. Carrying anything that weighs more than about 5 pounds? Absolutely not. I
recently spent a Saturday lying flat on the floor smelling profusely of Deep
Heat and applying heat patches to my back while my friends made me tea and
assured me it would ease off soon. All I needed to do was shower and get
dressed. Out of the question. Oh life.
5)
How many painkillers have I taken?
More organised and efficient hypermobile
sufferers will probably be much better with medications than me. As I often am
lucky enough to go by without pain relief at the moment, when I do have a bad
day I remember just how tough it really is. You basically become a
walking-talking albeit very drowsy pill-popper. When I got my first big flare
up I spent most days counting down the time until the next pain killer, then
forgetting which I could take and trying to avoid sleeping on my desk, on the
floor and on the stairs. Anywhere that looked a bit like I could lay really.
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