Sjogren’s Syndrome: a misunderstood condition.


This is not a post about books or writing. Bear with me, normal service will resume soon (I hope).

It’s been a while since I wrote about Sjogren’s Sydrome (pronounced show-grins although there is nothing funny about it). Over the past several weeks, I have experienced what medics and people with autoimmune diseases call ‘a flare’.

Many autoimmune conditions – like Lupus, Rheumatoid Arthritis, Sjogren’s to name a few – can be compared to waves on a beach. They crest and fall, making the condition totally unpredictable. It’s a constant guessing game. Will I sleep tonight? Will I be in too much pain? Will I walk with a limp tomorrow? Will I walk at all? 

During good times, you can almost forget you have it. Almost. Autoimmune conditions can go into remission but they’re always lurking. In all honesty, most of the people I know who live with autoimmune disease still suffer every day but when things are good, the pain is manageable and they can function. Whether good or bad, I take a lot of medication every day. Even during the good times, I have to pace myself and not over-commit. I find this one of the most frustrating things about Sjogren’s.

Actually, I find hundreds of things annoying about the condition.

Although Sjogren’s is becoming more widely recognised, thanks in no small part to Venus Williams for being so honest about her experiences, Sjogren’s is often represented as a condition where patients have ‘dry eyes and a dry mouth’. I’ve had doctors say to me “Oh, so do you get a dry mouth with that and gritty eyes?” Yes, I do and I wish they were the only symptoms. They’re not pleasant – the dry mouth makes eating certain things difficult and sometimes I get food lodged at the back of my throat – but I would far rather contend with them than what I do actually live with.

In addition to the dryness in my mouth (caused by the fact that Sjogren’s has destroyed many of my salivary glands) and the dry eyes (I produce barely any tears so even when I cry, my eyes are pretty much tear-free), I suffer daily pain all over my body, issues with my lungs and kidneys, brain fog and fatigue. I was told in 2013 by the lung specialist that I may need chemotherapy to dampen down the immune response. Thankfully, that hasn’t been required.

In 2012, when I was going through my last major flare, I was told by a Rheumatologist that I should prepare myself for the fact that I would (not if, would) “end up in a wheelchair”. Every time I wake up with more pain than usual, I panic and wonder if this will be it. I’ve spent time this year working towards acceptance of this. That’s not to say I’m going to hang up my shoes and give up, I will keep walking for as long as I can, however acceptance means I can concentrate on recuperating instead of putting my immune system under further pressure by worrying.

When I saw the emergency Rheumatologist a couple of weeks ago after begging my GP for a steroid injection (which has helped me pick up previously), she commented on how hypermobile I was. People have mentioned this to me before but I never realised that what I could do with my joints was unusual until a nurse went a bit funny during an assessment. The other week, the Rheumatologist warned me to be mindful of dislocation which is common in people with hypermobility but thankfully something I’ve avoided thus far (apart from that one time…). She also congratulated me on not having a steroid injection since 2012, as thought it was something I had achieved which, I suppose, it was in a way.

Over the past few weeks, I have wildly vacillated between sleeping sixteen hours a day and constantly tossing and turning, trying to minimise the pain. It’s the fatigue that has always got me down the most. The feeling that, no matter how long or how well you have slept, you are still exhausted in the most indescribable way when you wake up.

I know I am improving because walking around my house no longer feels like wading through treacle however going to the supermarket is still guaranteed to require a rest before and after.

For those of you who know me, you’ll know I am a motivated person. I hate that this condition makes me appear what some may term as ‘lazy’. I hate that it limits me in more ways than most people can imagine. I feel held to ransom by my own body every day (“if you do x then y, I am going to punish you. So choose one”).

Although I am more accepting of my body and the condition than I ever have been before, I still struggle. I struggle because I want to do more, be more. I don’t want to have to choose to do one thing or another – I want to do both and not suffer for it.

I guess I have a way to go yet. But, you know what? I’m tenacious. I’ll keep on at it. You might see me struggle but you’ll never see me quit.

Vic x

PS – I wrote a poem about Sjogren’s a few years ago, you can read it here.

11 responses to “Sjogren’s Syndrome: a misunderstood condition.

  1. Brilliantly written. I feel I understand more. You are awesome! Hoping you get a break soon xx

  2. “I’ll do anything.” And I’m sure you will. Every good wish for showing this condition who’s boss.

  3. Christine Featonby

    My mum suffered from Sjogren’s for many years before she was diagnosed. Back then, it was relatively unknown: it was actually her optician who suggested it, rather than her doctor! Having researched it, I now know her condition was fairly mild compared to how it can be; not that she would have agreed with that! She passed away eight years ago from Non-Hodgkin’s Lymphoma. While there is no suggestion that it was directly caused by Sjogren’s, it seems any autoimmune disorder of this nature may predispose the body to cancers of this type. I think few people realise how serious it can be. Fortunately, there seems to be greater understanding and better treatments available now. You always seem upbeat and full of energy, Vic, although I appreciate that will not always be the case. You are doing a great job of managing your illness, though. Stay positive and keep writing!

    • I’m sorry to hear about your mum, Christine. According to my specialist, there is a higher incidence of people with autoimmune conditions that subsequently contract Non-Hodgkin’s Lymphoma.

      Thanks for your kind comments. I do try to be positive. Xx

  4. Great post and I have a lot of empathy for where you are right now with your condition. Big (((Hugs))).

  5. I had no idea you were struggling with this, Vic, but I just wanted to say that I think you’re an amazing woman and by writing about it, you’re an inspiration to others. Hope you’re feeling ok x

  6. And I think I have constant concerns about the black dog and my diabetes. I’m a faker by comparison. But you will keep on keeping on, ‘cos that’s what Vic does, one of the reasons we love and admire you so much. Wishing you all the strength and help you need. Anything I can do, just say.

  7. Jackie Baldwin

    An informative and inspirational post, Vic! I think the amount that you achieve and the difference you make to other writers lives is amazing! I hate that you have to fight this nasty condition but you do it with such grace and dignity. Keep writing and keep keeping on! Much love. xx

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