Monday 12 September 2011

Invisible Illness Week 2011

This week marks the start of Invisible Illness Awareness Week (okay, so it's more of a US initiative, but here in Australia we are bit lacking in the PR side of things, so I thought I'd jump on the bandwagon to promote a bit of awareness in the Land Down Under).
As someone living with a nice little collection of invisible illnesses I know the challenges that can arise.

For those new to the blog, I'm 5yrs into living with Dysautonomia, or Bob as I like to call it.  Well five official years, if I look back at my photos pre-2006 I have a lot of sexy purple leg shots.  And if I look back over my life I have had periodic symptoms since my teenage years.

I am also living with:
Progressive neuropathy,
Degenerative disc disease,
A mutant jugular vein called Jeff,
Boobs that persist in growing in places there not supposed to, and popping out painful cysts and fibroadenomas like randy rabbits.
And if I ever pull my finger out to get an official diagnosis, Ehler's Danlos Syndrome.
To top it off I now have my delinquent gut, for which I am still looking for answers.

In other words, I have the Ford Pinto of bodies.

Despite my delightful and ever increasing list, I still look pretty healthy on the outside.  Okay not so much in the last two months since my dodgy gastric system has taken up residence.  As Mr G says, "well at least you look sick now".  Thanks honey.  Always there for the moral support.  But in general I can put on the spackfiller, whip on some lippy, and look relatively normal.  This can make my health issues seem rather confusing for others.

Apparently, I simply "don't look sick".  I also don't act like a sick person, whatever that means.  Foiled once more by my own Oscar worthy acting abilities.  The logical conclusion to this being, people think you're either not sick, or not as sick as you claim.  Which is understandable, right?  Because all real illnesses are visible.  You know, like Diabetes or heart disease.  Because their years of no medical training, makes them experts at spotting and diagnosing illness. (Okay, I may still be a little bitter about a few people).

It doesn't help that I was stupid enough to pick the obscure disorders.  The kind that no one, not even most doctors, have heard of.  And if it's not enough that they are obscure, they are also complex.  All of which adds up to yet another layer of invisibility to contend with.

What's a girl to do?

Should I highlight the black circles under my eyes?
Should I lie dramatically on a couch and moan?
Should I "woe is me" at every opportunity?

Would that make my invisible illnesses more real?

Maybe for other people, but not for me.

I live with it everyday.  They are very real to me.

It is real when I can't stand in the morning because my bp is so low.
It is real when I can't string a sentence together.
It is real when I can't open my eyes due to the excruciating pain in my head.
It is real when I have to lie on the tiles in my bathroom following a shower.
It is real when I can't feel when I've cut my legs when shaving, or burn my hands when cooking.
It is real when I have to hold my hips in with my hands when exercising.
It is real when I am bent over the toilet in a public bathroom because the nausea is so bad.
It is real when I lie in bed unable to sleep because my feet are burning to the point where I cry.
It is real when I pop a disc in my back because I have a scan at my local hospital.
It is real when I can't coordinate my legs to walk properly.
It is real when I grab the wall or have to stick my head between my legs because I simply went to the loo.
It is real when I can't get cool in the middle of Winter and must put on an airconditioner.
It is real when I can't exercise because it causes my bp to drop.
It is real when I can't feel the pedals in the car through my shoes.

It is real to me in a million other ways that I could list, but that most people will never see, or understand.

Disbelief and dismissal cut deep.  They attack the spirit.  Heard enough times, they are internalised until the criticism comes from within as readily as it comes from without.

It must be in my head.
I must try harder.
It is my fault.
There are others worse off than me.
I am not worthy.

Acknowledgement isn't about pity, it's about compassion.

Just because you can't see someones suffering, doesn't mean it doesn't exist.
Just because you don't understand, doesn't make it less real.

Compassion costs nothing.
But is priceless to those who receive.
And is a gift to those who choose to give.

Michelle :)

Here's a little post I wrote a couple of years ago.
Dysautonomia: Invisible Illness My Arse.


  1. I fully endorse collapsing dramatically on a couch and groaning at any opportunity to emphasise how crappy we feel - unfortunately this tends to get in the way of what life we do have ;)

  2. I love to read your posts. <3 Such an encouragement to me. I love your sense of humor!

  3. True story? I was a little relieved when my hair fell out. So there was some sort of proof I was going through something. And today it still seems weird I don't have a scar or some sort of physical proof all that happened. And it still makes me laugh when I get all anxious about annual scans and people say, "But you look great! It can't possibly be back." Because that proved to be such a good indicator last time. *ahem*

    As per usual, big squishy hugs. But they have to be kinda sideways now because...well...obviously.

  4. thanks so much for blogging for #iiwk11! wonderful writing! i will tweet it out this week. lisa

  5. If it makes you feel better...I like like to lie on the tiles of my bathroom floor too.

  6. In My Shoes: A Day In The Life Of Christian Loper, ME!

    Please read this blog about my best friends son...

    Your blog was great and I think you could be very helpful to them. Thank you for sharing!

  7. Very well said. My sister has Fibromyalgia and everyone thought it was in her head. My son also has something but we don't know what it is... Not everyone looks sick :)

  8. Claireliz77 - and that's the prob, gotta live life as best as you can. Mind you I kinda like some of those cool fainting couches

    Rachel - thanks Rach, glad my ramblings can give you a laugh. :)

  9. Elly Lou - I'll take those squishy sideways hugs. Crazy how we all want some external sign to validate what we are going through, even though we know how serious it is. Shall now run off and pimp your book some more. :)

    Lisa/Anon - thanks for tweeting this out. Awareness is key :)

  10. Kimberly - those tiles are super comfy some days.

    EMC - will have a look at the blog. Let his parents know they can contact me if they want I have an email in the contacts section up top :)

  11. Melissa - so sorry to hear about your sister and your son. It's so hard when people don't believe, just adds another layer of heartache to bear on top of what you are already going through.

  12. I haven't been looking on anything internty of late except to watch catch up tv. So thought it was time I dropped into a blog and yours is the first.
    I think you and I have a lot of similar symptoms and it seems EDS? I want to tell my gp that my automatic car seems to have a fault where it suddenly keeps going really slowly. Then I realise he is not a mechanic and I am thinking of the wrong person. It was only my son who said this week, I think there is something wrong with your foot mum it doesn't seem to realise its not pushing the pedal. So because I am clever, oh yes, I now look at speedometer and revs to check my foot is actually pressing the pedal. Does this have a name this I don't know what my foot is doing? I can't tell anyone but here as my blog is annonymous and I need to drive. Its safe as I have explained how I overcome this 'syndrome' but don't know what causes it so is it awful to read that you have this also and feel mildly relieved. Another thing it seems we have in common. I have lost my blogging mojo it seems although I may summon up the energy to post a photo or I may not. Have started new meds regime one of which is zomorph otherwise known as slow release morphine and am working out the right dose for maximum pain relief. It seems though one has to opt for having a little bit of a life versus comatose. I wish you were well. email me if you feel like it, my last email is probably lost somewhere in your box somewhere as I think it was sent when you were in hospital, but you will find it for the email address somewhere if you want to sound off. I missed you when you were away and know I should have commented sooner as this post was written ages ago, so am hoping all is well as can be for you. xoxoxoxoxoxo

  13. Achelois - I understand the lack of blogging mojo. I've been finding it hard to get interested in anything lately, not to mention the whole feeling like death warmed up all the time these days. The foot thing is Small Fibre Neuropathy for me. Pesky dead nerves, sucks. Not that I can hardly drive these days. Looks like my life as a hermit is well and truly beginning. I do hope you can work out the morphine thing so you can have that life plus pain relief space, though I know how elusive that can be. I'll look for your email, as I don't remember getting it (I would have definitely replied if I did). There were a few weeks/month that the old brain wasn't functioning much and frankly I've hardly been on the computer of late as it's all so tiring. I think I'm slowly coming out the otherside but I fear my bodies decided to come along for the ride whilst kicking and screaming. My youngest's suggestion that I get a cyborg body is looking more and more tempting each day. xxxx


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