Chronically Ill and Hopelessly Ambitious.

woman-talking-on-mobile-phone-looking-sad

‘I am so sorry’ I half sob down the phone. ‘I hate doing this, I really do’. At the other end of the phone is my boss getting the call for the 2nd or 3rd time this month that I cannot make it into the office today. Luckily I have a very understanding employer and I am never lead to believe there is any anger there when I am unable to work.  Still I feel it myself, I curse my broken body and wish I could just be well enough to make it into work.

Before I could even legally work I had already been diagnosed with rheumatoid arthritis. Naively as a teenager I couldn’t imagine why or how this illness would affect my career or my working life.

I was always going to be something or someone, I always wanted a career as a teacher, a writer, in marketing or PR. I was the weirdo who enjoyed school work and thoroughly believed that boredom should be classed as a form of torture.

I never stopped for a minute and thought how hard it would be to work for me. Even when I was missing school because I couldn’t physically get out of bed. I always assumed it would get better at least better enough for me to hold down a job.

It has improved from when I was 15, but I can have a flare up at any time and for a number of days or even weeks. Some days I can work through it others I simply can’t. It is not the way I wish it was. I envy those who call in sick once in a blue moon or have the option to ‘pull a sickie’.

I wake up some mornings and wish I could feel fulfilled by a life in at home, now work just me and Philip and Holly or Jeremy Kyle and the other stars of day time TV to keep me company.  That’s just not me.

I remember when a friend a couple of years younger than me was finishing exams and I asked what he’d like to do once he was finished. He answered ‘Go on the dole.’. I was so jealous of his lack of ambition in that moment. I wish I could be content in boredom and living off social welfare. I wished my only ambition was a lack of ambition.

Don’t get me wrong there are plenty of people who cannot work I was one of them for some time. However I think people have the wrong idea about us who are chronically ill. We want to work, we want to have high flying careers and climb the career ladder.

We don’t want to call in sick time and time again each time feeling guilty, anxious and unsure as to how your colleagues and employer must feel.

We want to be a success either keeping the job and status we had before we were ill or gaining that despite the fact we are ill.  We are fighters and it is only when we are physically and mentally unable that we won’t work. Won’t is the wrong word can’t is what it is.

The frustration of knowing that on a good day you can rock your job, you are on top of everything and you are willing and able to work your butt of. But on the bad days your mind can do all that is needed but your body doesn’t want to corporate.

I am lucky to have the Boss I do, I am sure it is frustrating for him too but he would never let me know. Not everyone shares my good fortune. Still, then I would look to other jobs, to alternatives to a more understanding employer or taking a break until you are well enough.

Please don’t lose your ambitions even if you are too sick to work now, that may not always be the case. Don’t give up on your dreams, hopes and ambitions…..but tailor them. Recognises that it may take you longer, it may be a harder road you have to travel but that will make you all the more successful when you get there.

That is what I have to believe to get through it. Today is a bad day, tomorrow I might take over the world. Keep going. Your chronic illness won’t give up and neither should you.

 

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To the Person who doesn’t ‘BELIEVE’ in my Illness.

 

dontbelievemeillnessThis year marks an official decade of having Rheumatoid Arthritis. Not something I will be going out to celebrate but still I am proud that I have gotten through the last 10 years.

I have met many people along the way, people who suffer like me, people who don’t know or care about my illness, those who want to understand but can’t, those that do everything in their power to be there for you and then those who don’t really ‘believe‘ in my disease.

Sorry but it’s time I said something…what does that even mean? My disease is not a fairy you don’t have to believe in it and clap your hands for it to be real.  Or rather is it that you don’t believe that it affects me the way I claim it can?

You see me smile and laugh, I get up I go to work, I don’t spend every minute of every day depressed or crying so it must all be in my head. Or maybe ‘it is just not that bad.’

I get not understanding what is going on with my body , hell I don’t really understand it but that doesn’t make me a liar and it doesn’t make this illness disappear.

I feel each time you roll your eyes into the back of your head when I talk about my disease. I feel your condescending tone when you explain how ‘easy‘ a certain task is. It is not easy for me. Every day brings new challenges that my body doesn’t seem to want me to overcome.

I have spent a considerable time of the last 10 years wishing it is all just my imagination. A bad dream, a storyline or a game I had gotten too wrapped up in. Sadly for me this is not the case, it is very real and I don’t need someone to pinch me to prove it’s not just a bad dream.I would love to come to the realisation that I was in some Sci Fi novel where the monster possessed by body causing me pain and I only had a few more chapters to endure and it would be slayed and I would go back to my life. But this isn’t a book or a movie this is my life. I have to live it every day, in pain.

Honestly if you don’t or can’t understand just how much this affects me and others like me I get it. I don’t hold that against you. It’s something I am still trying to get to grips with a decade down the line.

But don’t insult me by saying;

‘I don’t believe it’s that bad’.

‘I don’t believe it effects you that way.’

‘I don’t believe in it.’

This isn’t Santa or the Loughness Monster. My Arthritis is not something for you to debate. It is fact. It is an incurable fact of my life and whilst you might not believe, I have no choice in the matter as I live with it each and every day.

 

You don’t have to believe in ghosts, magic or true love but my disease is not up for discussion. Bear in mind this is not me telling you not to have an opinion, not to have a joke or not to ever doubt that sometimes I am a lazy cow (Cuz I so am) but it is me telling you to get a grip on reality.

I can’t clap my heels three times and wish it was all ok, well I can but nothing will happen. A handsome prince isn’t going to kiss me and cure me so that we can live happily ever after. This is not a Disney Fairy-tale this is life and frankly whether you believe or not it doesn’t make it any less real.