Pam’s story: “It’s been difficult to accept that I can no longer do things that I used to love doing”

Ahead of Rare Disease Day we are publishing blogs from people living with rare autoimmune rheumatic diseases. Primary Sjogren’s syndrome is the designation given when someone is diagnosed Sjogren’s without having a prior diagnosis of another rheumatological condition. In this blog, Pam talks about living with the condition, how it’s affected her and how she has been able to manage it.

It was just by chance that my GP asked for an ANA (Anti-nuclear antibody) blood test. I hadn’t been feeling too well for a while, but I was shocked when the test indicated an autoimmune disorder and he immediately referred me to a rheumatology department.

They carried out a few more tests and decided I either had Sjögren’s or lupus, and I remember leaving that first consultation with the words, “it’s probably Sjögren’s” and being given a small booklet about it.

For many years before this I had experienced so many different irritating symptoms – IBS, joint and muscle pain, dry eyes, dry mouth and fatigue to name just a few. I felt I was just unlucky having to tolerate these, sometimes all at once, and simply tried to ignore them, but as time went on, they worsened. Now I was beginning to understand how this one rheumatic autoimmune disorder could cause all of them.

Research brought me to the BSSA (British Sjögren’s Syndrome Association), an organisation which offers support and organises group meetings. Even though I hadn’t officially been diagnosed yet, I decided to become a member and joined my nearest group. Meeting with others was so useful; Sjögren’s is rarely diagnosed and it can be very isolating, so it was helpful to hear how others managed. It actually took two years, and many more tests, before I was diagnosed with Primary Sjögren’s Syndrome.

My GP suggested I attend the Expert Patient Programme that our local NHS Trust was running. This is aimed at helping people with long-term chronic conditions learn ways to self-manage their symptoms, and Sjögren’s certainly has a lot of them. It gave me the tools to better cope with chronic pain, to know how to break my symptom cycle, and, more importantly, it has taught me that I am my personal Sjögren’s expert. As my GP says, I know my Sjögren’s better than anyone else.

It has been my experience over the years that different clinicians look at Sjögren’s in different ways; some have not come across it before, don’t fully understand it or see it as a very mild condition. Whilst some people have very mild symptoms, for others it is so debilitating it can greatly impair quality of life, as well as impacting on friends and family. From one day to the next I never know what symptoms will hit me. Sometimes it affects my whole body to the point where I feel it would be so good if I could just have a brand new one!

I tell as many people as I can, especially women, to look out for the signs as I wish I had known about it earlier. I have now learned what some of my triggers are and take action to try and avoid a flare up.

It’s been difficult to accept that I can no longer do things that I used to love doing. Over the years I’ve learned how to use positive thinking and mindfulness, to remember there is always something to look forward to and I always make sure that there is. I have discovered other activities that I can do and enjoy when I feel able.

There is life after a Sjögren’s diagnosis. It’s just very a different one from before!

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