‘My Chronic Career’ is a sometimes weekly feature at Worklifespirit which presents interviews with people who have chronic health problems. The interviews focus on not just an individual’s medical experience, but also the impact on their life and career.
Jason Peters from Shrewsbury, Shropshire has kindly agreed to be interviewed. Thanks Jason!
(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)
Can you tell me a bit about your Coeliac history?
I was diagnosed in 1997. I had been diagnosed in 1996 with ankylosing spondilitis, after many years of physio, back specialists had prodded and poked me. The drugs given to me for my back reacted very badly with my as yet undiagnosed Crohn’s. I was very ill for 12 months, while they tried to work
out why I was so ill. It was only when a fistula appeared that I was finally diagnosed. I have been very lucky, as this has been the only operation I have required to date.
And how about your working life? What career path have you taken?
I am an electronic engineer by trade, although in my later years I have moved into a more supervisory role. I began my working career at Shrewsbury technology, a fantastic place to learn and have some life long friends from there.
I continued to play Rugby for a local team before and after I was diagnosed.
From Shrewsbury Technology I moved through a number of jobs, working at smaller companies. Other than when I had my operation, I tend to struggle through my flare ups, and only have had a handful of days off. I enjoy my work, and I’m not one to sit there and feel sorry for my self, so I push myself forward.
Did you know about your condition before you were diagnosed?
Yes, My cousin had it very acutely so was aware of the impact it could cause.
How did you find out further information about your condition when you were diagnosed?
My cousin who has the disease is also a nurse and a font of knowledge on the disease, I was very lucky, she gave me all the facts and knowledge I have needed really – she is a star!
Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?
Again, I don’t tend to bother with the internet. You can read such conflicting information. I just concentrate on what is right for me.
Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?
Situations involving food – e.g. Professional development courses with lunch included – usually sandwich based which is not suitable for anyone following a gluten free diet. I always take my own lunch along to this type of event nowadays and do my best not to feel awkward about tucking into my own homemade snack while others linger around the buffet table!The most difficult thing I find is when you are in a flare up, I get a lot of joint swelling and am constantly tired. When I have a flare up I tend to push myself hard to keep going. With my Ankylosing Spodylitis Staying in bed is not helpful, and as both diseases trigger each other, it’s a case of just doing your best.
I have to say all my employers have been very supportive, I try to be as honest and open about my illness wish helps them understand what I need to do to help them get the best from me.
What is your top tip for employers – what could they do to support people with your condition?
Listen to what your employee is saying to you, Most people I have met with any kind of illness just want to be treated like everyone else. They work hard when they are well, and just need the reassurance from there employer that intermittent days off will be seen as isolated incidents and a long term view is taken.
What is your top tip for employees with your condition?
As an employee, I really just try to do my best, Even if I’m only feeling 50% I tend to go in, I’m of the opinion that I have this for disease for life, and it’s a battle, so I don’t let it get the better of me with out a fight.
When you have a flare up of symptoms – what is your ‘coping mechanism’?
When I feel the beginnings of a flare up I go on to a white diet, it means you eat things with low fibre, easy to digest e.g. white bread, not brown, white rice, chicken etc. I also cut out caffeine and citrus fruit juices. It all helps to let your intestine have a rest, and seems to work for me. My cousin told me about it, and since then it has really settled my condition down and reduces the length of a
flare up. I also think it lets me feel I am doing something!
Do you think you have developed any personal skills or qualities as a result of having your condition?
The disease has made me a more open and honest person. I don’t worry or get embarrassed about talking about my disease.
What advice would you give people who have just been diagnosed with your condition?
I would say you need to get as much information as possible, not all will work, but it takes time to find out what works for you. Enjoy the good times, and manage the flare ups,
What advice would you give to the family and friends of someone who has just been diagnosed with your condition?
Just understand that when the are in a flare up, it is very tiring and painful accept that they just can’t “keep going” sometimes.
Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!