Living with Auto-Immune Diseases: A Patient Testimonial

Read here the very eye-opening testimonial from Katharine Wheeler, from LUPUS Europe, on the importance of patients’ feedback in diagnosis.

 

I have a collection of auto-immune diagnoses, one of them is life-threatening without treatment.

Very often the medical profession does not expect, or even accept, that we may not have only one diagnosis. GPs have rarely come across those more complex cases, and sometimes the GP is the person providing access to specialists.

The first disease I was diagnosed with is complex in itself. It can manifest in a variety of ways and is known as the great imitator. Because of this it can be blamed for everything. This was what happened to me.

In order to treat my disease, I was put on cortisone but every time I tried to reduce my doses to minimise side effects some of my symptoms returned quite severely. Despite that, I listened to my doctors and I ended eliminating cortisone from my medication… but I knew that something was wrong, that my disease must be flaring and that life was simply impossible.

I went through about 18 months of extreme exhaustion. A period where I was sleeping far too many hours in a day, where my life fell apart, where I lost money and rights in terms of social support because I was unable to fight a decision I knew to be wrong. My husband lost his wife, my children lost their mother… and the only answers I got from the specialist was that I should “discipline” myself to only sleep a half hour in an afternoon, that I was oversleeping and harming myself.

Presumption is a very dangerous thing. Yes, I am a mother, but most mothers are not exhausted in the same way I was, and yes, being active was more difficult for me because of my joints but unlike many people I know, I forced myself to go walking every single day.

Another presumption concerns depression. I am fortunate not to suffer from depression but can occasionally feel down simply because I am so exhausted I cannot think or function.  I should not be presumed to be depressed because I say I am tired.

After a long time and after nearly giving up, one of my doctors finally decided to look for something that no-one had tried before. They hadn’t looked because the disease is very rare in its auto-immune form. They hadn’t looked because it is presumed that a person will only have one auto-immune/chronic disease. They hadn’t looked because the problem I was having was presumed to be due to the cortisone I had taken previously, a temporary situation that would resolve.

It didn’t resolve because it couldn’t. Because this new, rare disease had always been there, pre-dating my first diagnosis. It had been hidden by the cortisone I was taking, the cortisone that had, coincidentally, been treating it.

I was lucky that one of my doctors had introduced a tiny dose of another type of cortisone. The dose was very small and not enough to treat a person who has Addison’s disease and who doesn’t produce their own cortisone but it was enough to keep me alive, just.

Thankfully, despite the worsening of my symptoms, and the increasing lack of “life”, I got my diagnosis in time. Addison’s disease can, and does, have fatal consequences. It is manageable and treatable but it is incurable. Treatment is for life and treatment sustains life.

My GP recently had a young doctor studying with him. At the end of our consultation, he asked me if I had any advice to give this young doctor. My advice was: Never presume (either medically or in terms of what you “think” the patient is doing). Always envisage the unexpected. Always listen to the patient. Always “investigate”.

I think though, it is also important to remember that, although these situations are rarer, I am not alone. I know many people with chronic diseases where the complexity of their medical picture has led to similar problems. I am NOT an exception.

Katharine Wheeler

Katharine Wheeler

Katharine Wheeler was diagnosed with her first auto-immune disease in 2001 (and has been collecting them since). She joined the Belgian Lupus Association a short time after her diagnosis with Lupus. Since then she has become increasingly involved in patient advocacy, becoming a board member of Lupus Europe in 2014 and Vice-chair in 2016. Katharine has a background in working with horses and language training in a corporate setting. Her hobbies include photography, aïkido, sheep herding with dogs and writing poetry and non-fiction.

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