I’ve always been the type of person that likes to be busy. I crave work and even create work for myself. It happened to be a particularly busy period of my life when I became ill.
In the months before my diagnosis, I was traveling all over the world; Australia, North America, and Europe. It was climbing the steps of the Arc de Triomphe that first alerted me that something was not right.
A sign of things to come
I was a fairly fit person before I was diagnosed with dermatomyositis. Two months prior to that life-defining moment of diagnosis, I was in Paris. It was a lovely spring day, the sun was shining, the Parisian birds chirped, and I felt I was at the top of my professional game. I was about to co-write a book on my area of expertise, and I was doing many speaking engagements across the world. In fact, I’d just been speaking at an international conference in Munich the previous day and had flown to Paris on my way home. I’d had some pain in my legs when walking to the conference centre in Munich but just shrugged it off. But then, that day, trying to climb the steps up the Arc de Triomphe and having to stop every few steps, I knew something was wrong. My legs hurt, I felt incredibly fatigued, and I had the strangest rashes on my body and hands. All I could think was “what the hell is wrong with me”.
I came home and went back to my GP, for the sixth time. This time I had a long list of symptoms and my latest rash on my hands. This time, finally, I was referred to a dermatologist.
When I was told by the dermatologist that this was dermatomyositis, all I heard was a blur of words. I asked the consultant to write the diagnosis on paper as I couldn’t understand what he was saying. I was admitted to hospital two days later.
Stress is my peanut
That was almost five years ago. One of the biggest changes in my life has been my attitude towards work. At the time I was diagnosed, I was building a very good reputation and I was proud of what I’d achieved. Dermatomyositis stopped this progress dead in its tracks. I could no longer work long, seven day weeks. Traveling was almost impossible; it exhausted me and caused flares of the illness. I was so ill, for so long, that the book I’d agreed to co-write was never completed. Dermatomyositis literally stopped me in my tracks.
I find myself five years on, with my disease, almost, but not quite, under control. Where once I had enormous energy and passion, now I struggle with fatigue and pain on a daily basis. My strength is better, but still half of what it was before dermatomyositis. Even doing work in the garden is something I have to ‘work up to’.
But the hardest thing I have to deal with is people not understanding that what I have is ongoing. I won’t ‘get better’ in the way that you get better after a cold or flu. Even on the best of days, I am still only half of what I was. I still put massive effort into my work and have even branched out to becoming a freelance technology writer. But now, I do my work in a much more measured manner. I know now, after watching my response, that stress, at any level, will make me very unwell. The hardest thing is making others understand this. I can only compare it to an allergy. If I had an allergy to nuts and ate a peanut, everyone would understand that I would become very ill. With dermatomyositis, at least my version of it, stress is my peanut.
So, here I am, after five years, knowing that it’s likely I will always have to deal with at least some of the chronic parts of dermatomyositis. And I do not have the luxury of giving up work; I have to work for financial reasons, but I also enjoy work, even if it does potentially impact my physical health. Being in a compassionate and caring company with understanding co-workers has helped me cope with my illness, and allowed me to keep my dignity in work. I hope that more awareness of myositis and its impacts on an individual will help others to live and work with this awful illness.
Susan originally trained as a chemist, and then set up her first software company with her partner, Steve, back in the early 90s. She still works in technology and writes about cybersecurity. She has a beautiful daughter and two darling grandchildren who make living with a chronic illness, bearable.