Why is it so hard for people who don’t have Ankylosing Spondylitis to believe in it? It’s like it’s a myth…

Okay, so last week I talked about my first experience of Iritis. This was the final piece in the puzzle that eventually meant I was diagnosed with Ankylosing Spondylitis, but I am going to deviate from that story for one week and instead tell you about my return to work following the six weeks I was signed off sick with Iritis.

You have to understand when I tell this story that I am coming from a perspective that I have a work ethic ingrained into me like it was carved into my skin with a knife when I was a child – you don’t take time off when you are sick. It just wasn’t done in my family, my parents both worked and so when I was sick I had to go to school anyway.

Recently when we moved house and timings with sale and purchase didn’t work out we had to move in with my parents which meant I had a 1½ hour drive into work and then home again. Not good for AS. I also had some very long days work-wise as it was my busiest time of year at work. So with the journey I was doing 12-14 hour days, and I suffer with fatigue. As you can imagine I started feeling really sick.

After two weeks of this I’d built up enough hours to claim back a day off, and I just felt really ill, phoned into work and said, I’ll hold my meetings over the phone today and take the rest of the time off. Even though my parents know I have AS (although even they really don’t get it) they walked around all day commenting on the fact I wasn’t working and trying to make me feel guilty for not working. Is it any wonder I find it hard to take time off sick?

Even my doctor said to me once when I asked for a medical certificate because I went into a really bad period. “What? But you never take time off?” Err, yes that’s a sign of just how ill I feel…

Anyway, back to the real theme of this blog post.

When I returned to work after I had Iritis, I returned to nearly all the team of people I worked with commenting on – why did I need six weeks off for an eye condition. People told me they’d had eye injuries and came in anyway. After all it was only one eye… I felt like they had obviously all been busy talking about me behind my back for six weeks, complaining that I shouldn’t have had any time off (bearing in mind, that for the previous four years I hadn’t had a single days sickness even though I had had inflammation in my sacroiliac joints all through that period).

I was using a walking stick at the time, and coming in to work late and going home early due to how ill I felt with fatigue. The thing with AS though is that your internal suffering really doesn’t seem to show that much to other people. I mean at the time every minute and hour of my life was a struggle and fight to get through.

I remember one day I was working with a director and I had to be in by 9am to support a training session for a group of very senior people, and I had to stand up at the start and open the programme for the day. I felt really sick because my body just really did not like getting up and moving early. My back and ribs were agony so I was shallow breathing to avoid pain, even wearing a morphine patch, and as I spoke of last week my limbs were shaking from the impact of the pain on my nervous system. I remember looking at myself in the mirror in the loo after I’d spoken too and thinking I just looked 90 years old and yellow and pale and sick, but my director who I was working with really didn’t notice I was ill at all.

A colleague’s mother had MS, and I used to have to be careful to avoid any conversation with her about my condition because I felt as though if I said anything about having a problem I was compared to her mother’s issues and considered to be just moaning.

My whole team really had no concept at all of how hard work was for me at the time or how ill I was, and I didn’t want to talk about it and keep telling them and telling them, because let’s face it, its dead boring listening to someone go on and on about how ill they feel.

The outcome of this situation though was that I became more and more isolated at work, I was excluded from social events in the evening because I was too ill to go, and therefore fell out of the social loop and wasn’t invited to anything they did in the day. To the point that they planned activities to undertake at work in social hours and so I ended up not knowing about these and just watching other people do stuff when it came to the point because no one had bothered to tell me about it.

How it left me feeling was harassed and bullied by exclusion, and even more isolated in a disease which isolates you anyway, as it is very hard to think over the top of pain, so it makes conversation difficult even at home with family, and home friendships also tend to die away too because you aren’t well enough to go out in the evening if you are trying to keep working.

I think some of the team used to feel I wasn’t pulling my weight work-wise compared to them too and this caused animosity also. Well, I wasn’t, that’s true, even now on medicine and being much better, I know I don’t work at the 100% I used to be able to do before I got ill. Physically I move much slower, and I think slower, because of the fatigue. My daughter always says there’s a time delay in our conversations, she asks a question then there’s a gap before I answer while my brain processes the question through its clouded fog of knackered-ness (that’s my made up word). But I was and am ill. I can’t change that and what I do at work I do well and perhaps better than some people who could work faster. But where’s the so what in this… How would I like to have seen this be different…?

Well, I hope that if a colleague at work says they have an illness, I will…

a)      Believe them and be encouraging and supportive, and there, if they need me to help out in any way

b)      Be inclusive and ensure that if I am planning any team activity, be it work or social, I’ll remember a colleague who has said they have restrictions and try to work out a way to include them

c)      Be understanding, and recognise that everyone is different and some people have restrictions which means physically they can input less but actually their contribution is still just as valuable and be grateful and value the 70% or 90%  they can give.

I work for an employer like this now – thank heavens they are out there.

If you have problems with your employer, and are looking for a new one, well despite having legal rights and taking the complaints route, which is an option, but one that can often cause more agony for you. As far as seeking a better job, I have always discussed my disability during interviews, because if they don’t want to employ someone with a disability, believe me I don’t want to work there, because they would just make my life hell if I did. 🙂

Next week I’ll get back to my story about heading towards that Holy Grail – diagnosis…

If you are having any similar problems and need advice, if you are a member of NASS in the UK, then I am sure their help line will be willing to give you some direction.

AS is my burden, writing is my escape.

And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. It changed my life (You can attend as a private patient or on the NHS).

Illicit_LoveMy debut novel is due to be published 2nd May 2013 (writing fiction has been my preferred painkiller for years and now I can share my escapism characters).  Sapphire Star Publishing are the publisher. If you want to find out more go to www.janelark.co.uk  like me on Facebook or follow me on twitter @janelark

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About janelark

a writer of authentic, passionate and emotional love stories
This entry was posted in Ankylosing Spondylitis, Health and tagged , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

6 Responses to Why is it so hard for people who don’t have Ankylosing Spondylitis to believe in it? It’s like it’s a myth…

  1. Oh how I can relate Jane. My husband always says ” well my mom did everything with her RA!”

  2. Peter says:

    I too have AS and I too know your knackeredness.. Thank you for writing your story. I want to go to Bath too and hope they had help me..xx

  3. Hi! This is kind of off topic but I need some guidance
    from an established blog. Is it tough to set up your
    own blog? I’m not very techincal but I can figure things out
    pretty fast. I’m thinking about setting up my own but I’m not sure where
    to begin. Do you have any tips or suggestions?
    Appreciate it

    • janelark says:

      Obviously use one of the established blogging sites, like wordpress or blogger, I just knew what I wanted to say though, and started writing, I have three different blogs for three different topics, and I found that they just role…

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