Stacey shares her experience of psoriatic arthritis, it's emotional impact and her journey into work.
Stacey spoke at the ALLIANCE annual conference on 30 May 2017, and her opinion coincides with the publication of the Arthritis and Work survey, a joint survey carried out by Arthritis Care Scotland and Glasgow University.
What do you visualise when you hear someone saying they have arthritis?
You may imagine an elderly person who’s lived a long life, not a 29 year old woman, who’s been living with Psoriatic Arthritis for 14 years? Spending the past 5 years of it in a wheelchair, who lost their job at 23 years, due to progression of her condition? Well that’s the reality of life for me since I was 15 years old!
The Arthritis and Work survey carried out by Glasgow University, highlights the impact of arthritis on work and the reality of living daily with pain, fatigue and disability. This report reflects how arthritis has impacted on me and many people living with a fluctuating condition.
With both my school and college education affected by the pain, fatigue and limitations I was experiencing, I was further devastated now to realise that I had no choice but to leave my job. Working in a pub meant I was on my feet all day, being physically demanding job, I had to admit that I now wasn’t able to do it.
Taking this decision was huge, the build up to it, physically and emotionally, was extremely difficult, there are many different issues that come up when your condition starts to affect your future. There’s a lot of anxiety, stress, shame and frustration when you find yourself starting to struggle to do things you have previously done with ease.
You then think that you have two options; you either tell your boss and fear that you may lose your job, or you hide it and fear you may come across as incompetent; either way you may lose your job anyway.
I spent many months struggling, not really knowing what to do about it or where to go for help and advice. This takes a huge toll on you mentally, you are in a constant state of worry about your condition, will you keep your job, or get another job? You wonder what happens if you lose your job, how you will cope on benefits, or even if you will get benefits, and how this will affect your live and relationships with people around you.
Like many people who live with a long term condition such as arthritis, I have had very little support to help me plan a career and future working life while living with a long term condition. Recently I have had support from Arthritis Care to build my confidence and skills, I was able to get help to return to work through their Joint Working service, almost 6 years since I lost my job. I am now in a placement that allows me to manage my condition, test my stamina and capacity within work. This will enable me to make informed choices when moving back into the workplace. If I had the right support earlier, my life may have taken a different path.