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Living with a chronic disease: Interview of Coralie, a Patient Research Partner

Photo by Edward Jenner from pexels

In three questions, learn more about Coralie, a mother, wife, and woman with a chronic disease. 

Photo by Karolina Grabows from pexels

According to Wikipedia a chronic condition is, “a human health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time“.

Can you explain to us what your chronic condition is?

Photo by Victoire Bouillot for thecirucular.org

“My chronic disease is called the “Sjogren’s syndrome”, is an autoimmune disorder that happens when the immune system attacks the glands that make moisture in the eyes, mouth, and other parts of the body. It’s a very rare disease. It complicated to explain because there are lots of secondary effect like a mental and muscular fatigue. It attacks my immune system. So, to be clearer, I’m more likely to have complications with a simpler disease than the norm.

Photo by Victoire Bouillot for thecirucular.org

A little cold can be more dangerous to me. We have a large European association bringing together a lot of people and it’s very encouraging to meet up at world congresses and make progress on the disease” – she confided to us.

How did you learn to live with your chronic illness?

“I found out about this disease when I was 40, in the middle of my professional career, and my children were still young. I don’t know if we can talk about a good time for it, but it really wasn’t easy at first. I was in a lot of pain and no doctor was able to tell me what was wrong, so I went round in circles for a few years. At first, I continued to work, but very quickly switched to part-time.

And it didn’t really work either. I was taken off sick quite quickly. My whole life was turned upside down, I couldn’t do things normally anymore. I can’t say I’ve got used to it because every day I discover a new pain. I have very caring people around me and I have very good doctors in Paris. I miss my professional life, but thanks to the association I travel a lot and I give talks at conferences and so on, so I still feel like I’m working. I never complain and I try to live with this disease as best I can.” 

What advice would you give to someone who has just been diagnosed with a chronic illness?

“Is not easy, there are so many advice that I want to give but I think the main is to be very brave, patient, and selfish. Brave because depending on the disease, the medical treatment is severe, in any cases, you must be brave because for the autoimmune disease, its usually takes a very long time or the rest of your life. This ties in with the second piece of advice: be patient. There is so many meaning with this word. Be patient with yourself and the other people. Being patient with yourself means listening to yourself, your needs and, above all, your pain. You don’t have to listen others (except your doctor obviously). You know better than anyone else your pain and your difficulties.

And the last one, selfish. I think it’s the main advice to me. These three words are linked but the conclusion and just be selfish. The good side of selfishness but, yes, listen to yourself and don’t do something you wouldn’t do for someone else. If you’re still working, if you’re a mother or if you have other obligations, don’t hesitate to say stop when you must, and don’t put up with it.” She told us.

European association of sjogren’s syndrome

For a better understanding of life with a chronic illness:

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