My chronic career – Sarcoidosis and fibromyalgia

I’m delighted to announce a new feature here on worklifespirit. ‘My Chronic Career’ will present interviews with people who have chronic health problems focussing on not just their medical experience, but also the impact on their life and career.

Morgan Bowers from Wolverhampton, West Midlands has kindly agreed to be interviewed. Thanks Morgan!

(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 Medical history?

I have sarcoidosis of the eye & possibly nervous system, benign joint hypermobility syndrome and fibromyalgia.  Generally they are related conditions give me debilitating fatigue, aches and pains, as well as inflammation of joints (ligaments), shortness of breath and pain/inflammation of both eyes (iritis).  I have been ill for some years but only recently was diagnosed with sarcoid after yet ANOTHER trip to the eye infirmary.  Sarcoid is an auto immune disease which can affect any organ.  There is no cure, although steroids are often given as treatment for inflammation.

And how about your working life? What career path have you taken?

I’m trained as an ecologist, currently working as a Senior Countryside Ranger.  I have worked for the RSPB and Wildlife Trust, generally in conservation and ecology, and have also worked as a freelance bat ecologist, doing surveys.

Did you know about your condition before you were diagnosed?

I had never heard of sarcoid, but I knew about fibromyalgia and had suspected it due to its connection with Benign Joint Hypermobility Syndrome, which I was diagnosed with some years before during physiotherapy.

How did you find out further information about your condition when you were diagnosed?

The internet – the first I learned about it was being told that I had elevated levels of something called ACE, which I had to look up.  The truth is that GPs don’t actually know a lot about sarcoid or fibro, and many people are in the dark until they are diagnosed and sent to at least a rheumatologist.

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

http://sarcoidosissupport.ning.com UK Sarcoidosis Information and Support Group

http://sarcoidosis.ning.com/ SILA – Sarcoidosis Support Charity

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?

My job requires some unusual hours, lots of driving and often dealing with the public. The first two can exacerbate my condition, and dealing with the public means that you can’t show that you’re in pain, which you do get used to eventually.   I have to just take things one day (or even an hour) at a time and pace myself.

What is your top tip for employers – what could they do to support people with your condition?

Well I think understanding it is one of the best things they can do – and for example in my position (on a temporary contract which may lead to a permanent one) I worry that my condition may be a factor in the decision my employers make regarding extensions to my contract. I am worried that they will think that I can’t do my job, or I’m too much of a risk / unreliable attendance really. So I only take sick days if I’m literally unable to get up and go out of the house.

What is your top tip for employees with your condition?

I’ll let you know when I figure that out! I don’t want my colleagues to think I’m whingeing about my health all the time, but I also need to let them know if I’m not capable of something, or need help. They are pretty wonderful actually, but I struggle finding a balance in how much and how often to communicate about what I’m going through. It can be pretty isolating, so its important to have a good support network OUTSIDE of work. My friends and my husband and brothers are, well, there aren’t words. I am very blessed.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

I immediately cancel all activities outside of my minimum work hours, as I know that I will be wracked with fatigue and pain.  I deliberately expose myself to positive influences (funny movies & books that make me laugh) as it can be a battle to keep your spirits up.  I think my biggest coping mechanism is to modify my expectations of myself and what I can physically accomplish.  Its very easy to fall into feeling guilty, which exacerbates feelings of laziness and worthlessness and frustration.  Flare-ups can spontaneously go into remission, so I always have that carrot dangling.  It could be tomorrow and I’ll be myself again.

Do you think you have developed any personal skills or qualities as a result of having your condition? 

My god I have learned to be patient!  And also to treasure my good days, which is something people take so for granted.  Actually feeling healthy and energised is a precious thing – I never take days like that for granted anymore.

What advice would you give people who have just been diagnosed with your condition?

Wow, well I think don’t panic.  But if they’re anything like me they will just be glad to finally have a diagnosis.  I have never been so happy to hear bad news!  My main advice is to SLOW DOWN, don’t expect too much of yourself, don’t expect miracles, and pace yourself – don’t go crazy if you have a good day, it will knock you back.  Get a good GP who is willing to discuss your condition – as many won’t/don’t , and rheumatologist appointments are a long wait.

So do less.  Expect less.  Give yourself time.  Improve the quality of your sleep.  Reduce your stress levels.  Eat right.  Exercise if you can (its so hard!).  Communicate.  Rely on your friends for support.

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

They are going to feel a number of things, often in quick succession:  weak, angry, lazy, frustrated, alone, unsupported, misunderstood, tired, aching, exhausted, tearful, breathless, dizzy and even depressed.

My husband has been fantastic, calling my Sarcoidosis “the surfin’ sarcoids” – because they surf around my body.  If he sees I’m having a bad day, he asks if they’re surfing a lot today, and that’s a nice way for me to talk about feeling awful, but in a way that’s funny and I don’t feel guilty for talking about it that way.  Its easier to talk about the surfin’ sarcoids than to whinge about Sarcoidosis.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

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