How others look at us, the chronically ill, impacts on our lives tremendously.
I have recently been refused motability and my GP refused to approve my OT's request for a scooter.
We go back to that same old statement
"But you don't look sick"
(And the silent reply "and you don't look .....insert adjective here" )
The thing is. You can't see my pain. No one can. As I've said before I've a terrible habit of playing it down. Wearing my mask.
I want to try and explain my pain to you. This is not intended for you to say "oh poor you" but to enlighten you to the hidden suffering that people with hidden illnesses endure. I warn you this is a long one. Grab a cuppa and get comfy.
So....where to start.
Before I do, I need you to remember this, it is not a case of one symptom at a time for a short period (chronic pain by definition is pain that persists after 3 months) but ALL of these symptoms ALL of the time, going on for more than a year now.
So let's begin....
Some of you may have seen pictures of me sporting half a shaved head (wouldn't been a full GI Jo if I'd had the guts).
This has nothing to do with fashion I assure you. My hair literally hurts. The weight of my hair pulling on my scalp causes pain. God forbid my hair gets pulled (I've a toddler) then it is literally like how I imagine a knife stabbed in the head to be.
The next knife in the head is this weird "headache" (hard to call it an ache because it's stabbing but hey), the nerves / blood vessels around my temple and the side of my head literally can't be touched. The pain is immense. On top of that, is the random, out of the blue ice pick in the brain agony. That one you literally have to cradle your head and DO NOT MOVE until the ice pick let's up.
Added to this is the good old migraine. Centred mainly around my right eye of happily gouge it out with a rusty spoon at times.
As an aside, turns out my eyesight is failing too. Nothing correctable it seems but structural and not improved by glasses, knowing that will likely deteriorate is really scary.
Following on from that is rather boring neck pain. Base of skull pain.
Back pain from top to bottom.
These are all up and down like a yo yo, the "worst" but can change in the blink of a site eye.
All this is wrapped up in skin that hurts.
This is really hard to understand for some I think.
Remember that whacking bruise you got from hitting your leg off a table or the like? Apply that tenderness (when you press on bruise) to your ENTIRE BODY......and now burn it. Sunburn I mean. Bad bloody sunburn ALL OVER.
Clothes hurt me, cuddling my son hurts me. Ahh jeez I could go on and on, I think you get the picture.
Add to this light, noise, smell over sensitivity my poor nervous system is ramped up constantly.
Now don't get me wrong they're not all at max all of the time. They are all there though ALL OF THE TIME.
None of this is visible. You can't see it. A lot of you probably don't believe it.
It's somewhat incomprehensible. All this pain and suffering non stop.
I think maybe you can see why I get frustrated, upset, angry when denied something that would really help.
Make my life more bearable.
I rarely get out. The car hurts me. I can't walk for distances. Pain and fatigue stops me after 20m. I can't push my wheelchair myself as my hands and wrists hurt (oops missed them off my list). Yet I am not entitled to a scooter because I will become complacent and "stop trying".
I'm getting some relief from CBD and I'm very passionate about this, I'm desperate to find something that works for all of my pains. This is another thing not available on prescription of course. Not everyone knows about it though and of course money is an issue. Doctors would still rather prescribe medications that have so many interactions and side effects they can sometimes make matters worse.
I guess the point of that essay is to implore you to look beyond the mask we wear. Consider the pain and suffering endured daily. You may be the person affected or have a loved one who is. I ask you to please share this blog.
Awareness is needed! This awareness is needed in the medical field too, knowledge is sadly lacking when it comes to Fibromyalgia. I know other sufferers of invisible illnesses feel the same. To all of you suffering I give you the very gentlest of hugs.
Thank you so much for getting through that ramble, you taking the time to read it is the first step.
I do have a Go fund me page if you are in a position to help at all.
Much love to all, keep fighting peeps xxx