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Personal stories

Susie: “Every morning when I wake up, I wonder what kind of day it will be”

Susie, 71, realised that her Sjögren’s had been developing over many years. It was first mentioned by her optician when she was 55.

I look back and marvel that no further action was taken. By then, I’d been diagnosed with auto-immune thyroid disease in my early 30s. In my early 40s, I developed reflux, needing lansoprazole to control. I had palpitations investigated. They found nothing to worry about, so I learnt to live with those.

It seems to be a common experience in Sjögren’s – reaching a diagnosis can take a long time. In Susie’s case, it was 12 years before her condition was fully acknowledged. Only then could treatment with hydroxychloroquine begin, which slows down progress of the disease. Some effects of Sjögren’s can be delayed, other symptoms can be managed by different medications. As a systemic connective tissue disease, it can affect different bodily systems. Everybody’s experience of it is different and can be hard to recognise, perhaps in part due to its varied presentation.

Susie went on to develop hearing loss, intermittent balance disturbance, extreme fatigue, disrupted sleep, dry mouth with sporadic ulcers, and a dry throat which makes swallowing difficult sometimes. She also has had to cope with episodes of ‘restless legs’, and ‘brain fog’, which in her case, accompanies exhaustion.

One of the hardest things is the constant uncertainty. For me, every morning when I wake up, I wonder what kind of day it will be. Will I have a muzzy head and brain fog, and have to move slowly and carefully? Will I have enough stamina to do what needs to be done? I’ve had to slow down a lot and learn how to pace myself. To work out priorities. If I get overly exhausted, I feel miserable and hopeless. That’s horrible. I work hard to keep out of that state.

Sjögren’s can be a lonely condition. None of Susie’s friends or family had heard of it. She wanted to be able to explain it a little, so has read a bit about it from a variety of sources. Being part of a local support group, under the umbrella of the British Sjögren’s Syndrome Association (BSSA) charity, has been helpful in connecting her with other Sjögren’s people. She found the BSSA helpline useful and had used it a few times. Charity helplines can be lifesavers, fulfilling a crucial role despite their limited resources, by allowing those with Sjögren’s to not feel so alone with their struggles.

I think there’s a whole grieving process to go through when you’re told you’ve got a chronic disease, whatever it is. There are losses. For me, the biggest loss is spontaneity. It’s a palaver, but I’m getting used to it now. I work hard to keep a positive outlook on life. I listen to healing meditations, I read the “Action for Happiness” website, and I write “3 Things to Be Thankful For” as many days as I can. I think it all helps.

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RAIRDA is calling on you to raise the profile of rare autoimmune rheumatic diseases in Parliament. Send our template letter to your local representative today and help #ResetTheBalanceForRAIRDs. rairda.org/get-involved/2…

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Our co-chair @lanyon_peter attended the #RareDiseaseDay parliamentary reception yesterday. It was a great opportunity to meet with others from the rare disease community, and to hear from @GeneticAll_UK, @LizTwistMP and @Helen_Whately. @MBythell pic.twitter.com/gPRAFGNL51

Take action this #RareDiseaseDay by contacting your parliamentary representative to ask them to advocate for people with RAIRDs. Together, we can #ResetTheBalanceForRAIRDs. rairda.org/get-involved/r…

This #RareDiseaseDay, read about RAIRDA's plan for #ResettingTheBalanceForRAIRDs, and how you can get involved rairda.org/rare-disease-d…

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