Wednesday 4 August 2010

Perspective: DARE Re-post.

Having a bit of a blogging block, so I thought I'd re-post an article I wrote back in March for one of the Dysautonomia support groups I'm involved with, DARE.  

I realised today that I have spent so long trying to minimise my illness that I have lost sight of what it really is, and how sick I actually am. Why I’ve chosen this path is complex. I’m not completely sure I can identify all the reasons why I do this, but I’ll try.

I know part of it is my attempt to shake my fists at the universe and say, “You can’t beat me”. To tell my illness that it doesn’t own me and that I am still me under my compression hose and gallons of water. You need to do this to survive. It’s hard to keep getting out of bed each morning unless a part of you says I can do this, no matter the reality of the situation.

I know part of it is that I am sick of being the token ‘sick’ person. I’m over it. I don’t want people to know how ill I am.  I don't want the first question to always be about my health.  I want them to see me rather than dysautonomia.

I know part of it is my strong aversion to pity. I would rather kill myself putting on my ‘well’ mask, pushing myself to the limits and suffering for the next week, rather than get the pity look or comments.  They cut me to the quick and leave me with a sense that the word 'VICTIM' is being continually carved into my forehead.

I know part of it is that my ‘well’ baseline is now so much lower than those without chronic illness. How do you register a ‘sick’ day, when every day is a 'sick' day.  Symptoms that were so strange and frightening at the start are like white noise now. I’m permanently dizzy. I’ve had 7 years of dizzy.  I don’t really remember being non-dizzy anymore. If I didn’t wake up to nausea each morning, I think I may feel as though I’ve lost a part of myself (not that I’m not willing to give it a go).  'Normal' doesn't necessarily have to be a good situation, but it is familiar and that translates to a warped sense of comfort.

I know part of it is that I don’t look sick most of the time.  Not that I go out in public when I am really ill.  As those of us with dysautonomia have all experienced, people are happy to tell us we don’t look ill.  They might as well scream “LIAR” each time, as it is frequently clear that there is a 'look' to being sick and like jeggings, it is something that I am yet to master. 

I know part of it is that I used to work in a hospital. I know what ‘real’ sick looks like.  I've worked in palliative care. I know what these patients and their families went through and, my illness seems so petty in comparison. Basically I feel guilty for saying I am sick.

I know part of it is I can’t stand people who wallow in their illness. Who roll around in every bit of pain and discomfort and seem to enjoy the sick role. A while back I was on a forum and the topic was related to severity of symptoms. What began as a a simple exchange of what each person was experiencing, became a game of oneupmanship. Certain posters tried to out-sick each other. Bizarre, and certainly not a game I ever wish to win. 

I know part of it is that many of these same posters say, “I am super ill and yet I still manage to work, volunteer, raise my family, work on the PTA, cure world hunger, organise peace in the Middle East, and solve global warming. Those who say they can’t, have a bad attitude and are lazy”. Logically, I know they are tossers and would most likely be in every aspect of their life, but it still makes me feel less. So I fight through to try and do things that I know, in a moment of clarity, are far beyond me and fail miserably. I can’t even be sick right!

I know part of it is that growing up I was always taught to hide my true feelings. When I was ill as a child I was told I was a hypochondriac and to harden up. If things were bad we hid them and in turn hid ourselves. I was raised in a family where only the weak mentioned they were feeling unwell.

I know part of it is that incompetent and misogynistic doctor who told me it was all in my head. Thanks to a long list of cardiologists and neurologists, I know he’s wrong.  But I still have that nagging little voice saying “you don’t have an illness you are just a nutter”. Stupid I know.

I can sit back.  Put my psychologist logical hat on.  Sit my illogical emotional self on the couch and ask that part of me to tell me about my mother (oh self, lets not go there, thats years of therapy) and pull apart my illogical reasoning. But often we are driven by those little voices that tell us how we ‘should’ behave. I hate those voices with a passion but I still hold them close, they are my 'frenemies' and it is hard to part with them.

The other day I had a bit of a reality check. I wrote a post about the good old ‘simple faint‘, on my personal blog.  For those of us who experence this or even pre-syncope on a regular basis it just becomes part of the daily existance. But I was shocked by the comments and messages I received. People were truly horrified about the whole experience.  I’ve had similar comments before about posts, where people wish for me to get better, but never the shock aspect.

I was taken aback.

Am I really that sick?

Am I really experiencing something so horrible?

I mean I know it’s not pleasant, but it’s part and parcel of living with dysautonomia.

Then it stuck me. I’ve been living with this so long that I’ve lost sight of what I am going through. My normal is so skewed from reality that I have lost the ability to  see my dysautonomia with clear vision. If one of my loved ones was going through what I described I would be horrified. I would never judge them like I judge myself.

I realised that I don’t have to deny my illness to be able to live with it. It’s not about rising above it necessarily, but accepting it for what it is, and to find it’s place in the big scheme of things. I don’t need to minimise it to make it bearable, that only increases the load I have to bear. I’m going to bring it out of the shadows, not for anyone else, but for me. Admitting it does not make me weak, self-indulgent, or all the other negative names I can throw my way. It’s okay for me to be sick.

Now I’m not saying those little voices wont keep getting their way on occasion, I’m realistic enough to know that. But I also know that’s part of the process. It doesn’t have to be an all or nothing. It’s the journey to find a balance between the two.

They say that part of the solution is admitting you have a problem so I’m going to start:

“Hi my name is Michelle and I really am sick. And that’s okay”.

Michelle :)


  1. Dude, you couldn't be further from someone who wallows in it, even though you're probably quite entitled. I think you do a fine job of dishing out your crazy awesome sense of humour and even making fun of Bob, without at all belittling the seriousness of it. Plus you have some rocking vintage type dresses! :)

    I say you're allowed to have days where you whinge and complain if you feel like it. Hell, I have those days and I only have PMS. Ha!

  2. VA - babe, you are so my favourite assassin. I don't tell you that enough :) And I must say PMS is so worthy of a whinge (and recession margaritas of course). In fact I think it is compulsory :P

  3. Thanks again for putting into words what so many of us feel! I'm always telling myself at least your not a burn victim or have cancer, and like you there are so many reasons to belittle the disease. Mostly I don't want it or the pity that goes with it either. You're amazing and I'm thankful you had a blog block, I would have missed reading a great blog!

  4. And you post this on a day when I look at myself, accept what I am and where I am (when I don't have nearly the issues) and make me glad.
    Thank you for re-inserting my spine and giving me a good kick.

  5. Sorry I couldn't make it through the whole blog. Today when I'm reading, I'm having one of those days where I read a sentence, go back read it again, and again, and still have no clue. But I did want to say I love the new blog Header! Those shoes are HOT! Love ya

  6. Everything is relative, right? I mean, you can only judge the world in relation to what you're going through or have been through. Like when people say, "It was the worst thing that ever happened to me." There are people that have had super lucky lives and the worst thing that ever happened to them was stubbing a toe. But for them, that toe stub was EPIC. You just have a really high threshold for bad shit.

    I dunno, I spent a lot of time thinking about our ever evolving definition of normality.

    I'm not sure this is coming off the right way so I'll end with *hugs*.

  7. i can remember the first fews weeks of symptoms, the nausea stayed with me for seven months, now as you say, its white noise, along with other symptoms. the only one i cant tolerate very well in the lack of breath. still gives be the heebie geebies.

    and when others say, 'theres always someone worse off than you'. oh really. smiling and looking well i sit stunned, silent,voiceless, what do you reply to that michelle? x

  8. What a great post, I am so glad you put it up again as I didn't read it the first time.

    To the piss poor doctors or people who ask stupid questions, I say just ignore them, you know the truth and you know what is best for you!

  9. I was only just thinking the last couple of weeks that weirdly enough, I now have a new normal. What you may have thought was terrible when you were well might now be considered a good day. It's all relative I guess.

    Funny though, since I have been sick I care less and less about what people think of me as time has gone on. It is extremely liberating - one bonus!

  10. I was only just thinking the last couple of weeks that weirdly enough, I now have a new normal. What you may have thought was terrible when you were well might now be considered a good day. It's all relative I guess.

    Funny though, since I have been sick I care less and less about what people think of me as time has gone on. It is extremely liberating - one bonus!

  11. It was strange reading this post, because it felt like something I could have written myself, because I feel & think so similarly. I was a nurse pre-illness and I think, like you, that almost makes it worse - more complicated. And I've had that long list of crappy doctors who treat me as unimportant-not-really-sick-annoying-patient.

    I've also had a few moments over the last year that have made me reassess how I see myself, and my health - and realised that I really am living with a brute of an illness, and that it's ok to be honest about that and not just put on that 'brave' face. (Actually not so much brave as in denial, if you think about it, lol) Now ... if only I can keep that new, shiny attitude, I'll be set! ;)

  12. Best blog ever, that is all I can say! I have M.E. with POTS as a secondary diagnosis but so many of the issues are the same. You write so so well. Thank you!

    1. FibroMyalgia? I was told I have that once upon a time. Dunno if it's right but it sucks. I simply had a T.I.A. when I was 20 and a long term childhood illness at about the time most people start secondary school (Middle School in the states) and between the 2 my life has become very different. I've been told for a LONG time there was "nothing" wrong with me. Imagine my shock to find out I was told incorrectly because of my age. Several times for several problems. Imagine my family's reactions as well. Oh wait never mind you've probably LIVED this along with everyone else here, am I right? Anyways, you're amongst friends and neighbors here, so no worries. And yes Michelle is Awesome!

  13. Susannah - yep, working in health does not help with these issues. It's a whole other level of complexity as to how we see ourselves and our illness. My own new shiny attitude, waxes and wanes. But I am better about not beating myself up about it.

    J Bassett - thanks for your lovely comment. I'm not primary POTS either. I'm Dysautonomia, secondary to progressive neuropathy (well that's the latest in a long list of diagnoses, so who knows if something else will come up) with some lovely added extras on the side. But I do think chronic illness in all it's forms has many similarities with regard to experiences and the emotions it elicits.

  14. I personally would ask Mr/Ms SuperHero if they could pick up a few of your things while they are out saving the world. Makes sense to me. How about you? we all are effected (affected, see I can't even remember anymore) differently by the sun, moon, stars and rain that anything MORE complex would CERTAINLY produce a mosaic of effects that are all different in different people. It's almost a "well duh" situation though isn't it. I have never been the same since A happened nor since B happened. I got used to the "new normal" over and over again and learned to do my best and to also eventually learn to tell the world off about making me keep to their standards. I think it's a part of life. I think it's a part of being an adult. And you do it with more grace then this "Southern Belle" has ever managed to muster. Heck when my spoons are gone it's usually time for the Exorcist to be called. so you're in a better place then me, lol! Who else can understand waiting to place a grocery trip (of all things) for a Saturday KNOWING I will be out of it until the holiday on Monday is over. Or why I plan for that to be pizza night after i just bought a house full of food. Much less being non-pulsed by the strange red spots I broke out in because of it. It doesn't itch and I have no fever, la-de-da.......Sometimes being in health doesn't help but sometimes it's THOSE people that DO get it more often since they've been called in more times then I can count to help clean me up and have SEEN the "Crime scene" that is my bathroom. And getting those family members on my side makes it a whole heck of a lot easier. Ignore the stupid people, it's not a contest. I simply have more spoons then you do, doesn't mean I don't have to count them just the same. Speaking of which, it's time for a nap, or a movie marathon. maybe both. Hugs lady and Thank You again.


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

Note: only a member of this blog may post a comment.