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There’s nothing wrong with asking for help

I was a sporty teenager who liked nothing better than running around a hockey pitch or netball court. So when I was 16 and started complaining about feeling unwell in 1980, I was dismissed as being a bit of a hypochondriac. Even when my one knee swelled up my GP told my mother it was stress, despite my father suffering from rheumatoid arthritis.

Eventually, I was sent to see a consultant who kept me in hospital while tests were done. At the same time I developed small patches of rash on various parts of my body. After a few years, I was only told that I had ‘sero-negative arthritis’ but no mention of what the rash could be. This was in the era when doctors told you as little as possible and you didn’t question a consultant’s opinion.

People’s reactions were on the whole sympathetic, however I quickly got to sense two things. Firstly, they couldn’t quite believe I had arthritis at my age and secondly, people quickly became sick of me moaning about how I was feeling. I vowed then that this was something I was going to have to deal with myself as much as I could.

People will help and sympathise as much as they can but it was me that had to walk on those legs when some days each step felt like my knees were on fire. So whenever people asked how I was feeling they would get the standard reply ‘I’m fine thanks’ said with a smile on my face. I figured close friends would know when I needed more support.

Over the years my joints got worse and I suffered a great deal of pain and fatigue. It was mainly both knees and both elbows affected none of which have been able to straighten or bend fully since the middle Eighties, although most of my joints are now affected. My knees would swell up and I would need the fluid removing, I can stand any injections – I’ve spent plenty of time sat with the phlebotomist as they try to get blood out of me, but still cringe at the thought of that being done.

I did not start on DMARDs until six years after the arthritis had started so my joints have been affected quite badly. I got married in 1986 and part of my preparation was arranging steroid injections to make sure I was well enough to manage the day. I’ve had several spells in hospital for tests including 1990 after I went through a bad spell. It was only when the dermatologist came around with some students and mentioned psoriasis that I was told I was suffering from psoriatic arthritis. I was put on methotrexate and  I am still taking it now. I have managed fairly well over the years and have had several operations including a knee replacement recently.

Having qualified as an industrial chemist I started work in a Laboratory. This was a very difficult time as it involved lots of walking and standing on my feet. I struggled on for several years before being made redundant. After that, unable to pass medicals for jobs I was signed off work. I have carried out voluntary work for 20 years which is great as if I don’t feel well then there is no pressure to attend. I have had psoriatic arthritis for 34 years and have certainly learnt a few things along the way: I try not to feel sorry for myself – it’s not going to change anything. I try and focus on what I can do rather than what I can’t. There’s nothing wrong with asking for help, it doesn’t mean I’ve lost my independence.

However, I do what I can as if you stop using your joints it’s a real challenge to build the muscles up again. I’ve always tried to manage my condition as far as I can. Doctors have got better at discussing things with me rather than ‘telling me what they are going to do/give me’. The more I’ve questioned things the more I’ve learned about my condition.

I’ve always tried not to let having arthritis change me as a person and I would like to think that people see me first and the arthritis last!

Submitted by a 50 year old female in England

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