UnTouchableSjögren's syndrome
Sjögren's syndrome is a long-term condition in which the immune system attacks the glands that make the body's fluids, so they stop working properly. The effects people know it for are dry eyes and a dry mouth, but it also commonly brings aching muscles and joints and extreme tiredness, and it can cause a persistent cough, a hoarse voice and swollen salivary glands. More women have it than men. It varies a great deal: for some people the dryness is mild, for others it shapes the whole day. Why the immune system behaves this way is not known — genes, hormones and an infection acting as a trigger have all been suggested. There is no cure. Treatment is aimed at the symptoms: medicines to keep the eyes and mouth moist, to reduce inflammation, to help with pain, and in some cases to damp down the immune system, alongside practical things like drinking often, careful dental care, protecting the eyes and staying out of dry or smoky air. The NHS says most people with Sjögren's syndrome live into old age with the same life expectancy as anyone else, though it is linked with other problems including arthritis, depression and, rarely, non-Hodgkin lymphoma. Its advice is to see a GP if you have symptoms of Sjögren's syndrome and they are affecting your daily life.
This is a plain summary, not medical advice, and it is not a substitute for talking to your GP or your clinical team. For NHS information about sjögren's syndrome, speak to your GP or call NHS 111.
People who have talked about it
1 story, each one written in our own words from what the person said publicly themselves.
Venus Williams
Venus Williams on Sjögren's syndrome, and how ill she had to get before anyone looked
In June 2022 Venus Williams posted a video on her own YouTube channel about living with chronic illness. She said she was diagnosed in 2011 with Sjögren's syndrome, an autoimmune condition, and that she lives with it every day. She explained what it does. The symptoms it is known by are dry eyes and a dry mouth — those, she said, are what set it apart from other autoimmune conditions — and alongside them come the joint pain and fatigue that autoimmune conditions tend to bring. For her the dryness means contact lenses are not an option. She said it can get bad enough to cause mouth sores, and that some people have their tear ducts plugged, because eyes that dry run constantly. The part she kept returning to was how long it took to find out. She said autoimmune conditions are tricky to diagnose and that people wait around seven years on average, and that she was squarely inside that window. She went to doctors and told them she did not feel well. Somebody whose living depends on knowing her own body said something was wrong, and it was not until she was too ill to carry on playing professionally that she got an answer. Helping other people get diagnosed and treated sooner is now one of the things she says she wants to do. She talked about what it took from her career. She had to stop altogether and was out of the game for around nine months, and before that she had struggled to play her best without knowing why — frustrating, she said, when you hold yourself to a standard you can no longer reach. She described flare-ups: stretches where you are more or less all right, then a marked drop into intense joint pain or fatigue. The things she says help her are ordinary ones: drinking enough, sleeping enough, eating well, having her blood checked, and learning to pace herself rather than pushing until she crashed and could not get up. She was careful to say twice that she is not anyone's doctor and is only describing her own experience, and that the first step is seeing a doctor and getting a proper diagnosis. She finished on the part nobody sees. She looks well, she said, and people who look well get told they cannot be ill. You do not need everybody to understand, but you do need the people close to you to, because you can look fine and not be fine. She pointed viewers towards the Sjögren's Foundation. Nothing here is medical advice, and what one person finds helpful is not a recommendation for anyone else. The NHS says to see a GP if you have symptoms of Sjögren's syndrome and they are affecting your daily life.
Photographs, in order: Venus Williams by Hameltion (CC BY-SA 4.0).