Margot’s story: “I had a lot of people telling me it was all in my head”

We’re publishing a number of blogs from people living with RAIRDs in the run-up to Rare Disease Day. In this blog Margot, who lives with Sjögren’s, talks about her condition and her journey to a diagnosis.

I had symptoms for many years, but it wasn’t until 2014 that I saw a specialist and only in 2017 that I was diagnosed with Sjögren’s Syndrome.

Over that time before diagnosis, I had a lot of people telling me it was all in my head – although an eye surgeon who operated on my eyes remarked that my eyes were dry, which is a symptom of Sjögren’s. It also didn’t help that some of the diagnostic tests are more indicative than definitive and didn’t give a clear answer in my case as to what the problem was.

My symptoms include a permanent dry mouth, dry eyes, dry ears and fatigue. That might sound trivial but in practice it means I have to put eye drops in my eyes every hour or so, have difficulty eating and swallowing, and my fatigue is horrific to the point I often have no choice but to sit down. The dryness in my ears has also caused hearing loss and even with a hearing aid my hearing is really poor.

It is a difficult thing to live with, and when acute the symptoms can take over your day. There are all sorts of symptoms and they overlap with other diseases. The fact I also have symptoms of these other rheumatic diseases can be very puzzling.

The fatigue is extraordinary, you are warned to try to take your time over everything you do. It is frustrating for me; I was very active, and my job was very important to me – I loved it and I really wanted to go on working. Accepting you need to slow down and accepting you have a rheumatic disease is very difficult.

I was very grateful for webinar recently run by the BSSA (British Sjögren’s Syndrome Association) for patients with a specialist. This was useful for me and served as a reminder about some of the care for my eyes and teeth. I’m also really lucky to be part of a local support group with other people in a similar situation.

Awareness and understanding of Sjögren’s is not great among some health professionals and it would be helpful is this was improved. Although the specialist I see is a real expert, they are limited in their time. For nearly a year now, they and their team have also been supporting with COVID-19 care, which means it has been really difficult to get help and advice at times. Improving the awareness and understanding of Sjögren’s would be really helpful in situations where those specialists aren’t, or can’t be, involved.

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