Wednesday, 22 June 2011

Being an advocate for Ankylosing Spondylitis

Masquerade of Words (Spondylitis Blog Carnival) is a new group which I have joined, and as it says, it is for blogs related to AS. Subjects for discussion were Guilt and Being an Advocate for AS. I have dealt with the Guilt blog, so now onto Being an advocate for AS.

On consideration I do consider myself to be one, I have always told people what was wrong by name, rather than just saying a type of arthritis, though often did have to end up using that description as few people had heard of AS. During the years, when I had major surgery on my spine, I told people what had been done and why. When I kept breaking my back, I would explain why. When I had what felt like almost continuous iritis, I would explain the what and the why.

In the early years I looked quite "normal" so there was always the feeling that people didn't take AS that seriously, after all I looked fine. In fact I used to get so bloody sick of people saying "but you look so well" as though I was making it up, however if they came upon me during a flare...... Even doctors would come out with the looking good condescending type remarks, which led me to believe that unless you were obviously unwell or screaming in pain, no one really took you too seriously.

Well despite my efforts, and partly because too much damage had been done in the years it took to diagnose my AS, no one can now be in any doubt that I am not fine. I am very stooped, very little movement in my neck and so on, so now when people ask what is wrong, they have a much better idea of what is involved, and they no longer say how well I look - actually they do as I am not pale and feeble looking - but I explain that is to do with a good attitude, good makeup- and red hair dye!!!

I have always been up front with people regarding what is wrong, and, unfortunately, I am now a walking and talking example of the wreckage of a body it can leave you with. I actively take part in various groups and blogs to widen the knowledge and understanding, of those with AS or other chronic conditions. I hope in my way I help family and friends understand what we go through, and that the information and experiences imparted by myself and others like me, might help newly diagnosed people deal with their situation, and encourage them to strive for all the help and medication etc that is out there. This may, in some small way help them to have a better outlook than people of my generation.

I do worry sometime that people consider that I am simply feeling sorry for myself, or like to talk about myself all the time, I  have had this awful disease for 2/3rds of my life, it rules my life, but maybe if the treatments and drugs that are around now had been available then my life could have been much different, so I am passionate about making sure that all newly diagnosed people have as much knowledge as possible made available to them so they have the best chances possible.


  1. Got my 'official' diagnosis of AS on Monday (but it has been a big possibility for about 3 months) and still unsure how I feel about it. I am very lucky that I pushed for a referral to rheumatologist about my pain as I already have ME and just knew it was something other than 'wear and tear' making my hip hurt, and diagnosis only took 18 months from onset of pain. Although the pain in pretty severe the actual 'disease' is still very mild, probably due to heightened pain receptors because of my ME. Treatment is just anti-inflammatories and 10 weekly steroid injections in butt for the time being.
    Apart from the weight gain due to not excericing because of the pain (and may be a bit of comfort eating to help the pain/depression) I look perfectly healthy (some of that is due to make up and hair dye) and it can get really annoying when people give you lack look of 'are you sure you're ill'.
    At the moment I'm finishing my dissertation but as soon as that is done I'm going to be pro-active about stopping the AS from damaging me - lots of stretching, gentle exercise and loose some weight. Great blog!!!

  2. Hi Jackie,
    You are an AS Advocate. You were one of the first people I met on FB and twitter and that makes you a leader in our AS Community - as are most bloggers - taking the lead to talk and share and work to hopefully make the newly diagnosed lives a bit better - a bit more understood. What I love about the way you approach things is you have a way of giving us a glimpse into what a life could be - we could become fused. We could lose mobility. We can talk about it. We can choose how to live with the disease - and you my friend do it with grace and humor - and RED hair!!!! That is you winning not the AS! xox - Jenna