Living better with Sjögren’s disease
Written by Geoff Case, RARE Revolution Magazine
Susan Barajas, chair of the Sjögren’s Foundation board of directors, shares her insights into living better with Sjögren’s disease. She discusses approaches to managing fatigue, exercise and diet, and pacing.
Susan Barajas counts herself as lucky to have been diagnosed quickly with Sjögren’s disease, soon after her initial symptoms. At the age of 60, experiencing hand pain, she made an appointment directly with a rheumatologist—fortunately, her medical insurance made this possible. Her test results showed antibody markers for Sjögren’s disease, so her diagnosis came soon afterwards. In retrospect, she recognises how her mouth dryness was another tell-tale symptom.
In the eight years since then, Susan’s life has changed “quite a bit”. Along with her Sjögren’s disease, she has peripheral neuropathy, which causes numbness in her hands, Raynaud’s phenomenon and orthostatic hypotension. (Comorbidities are common with Sjögren’s disease.1) She sees several specialists, including a rheumatologist, cardiologist, dentist, internist and ophthalmologist, three or four times a year. “My life is filled with doctor’s appointments—that’s my life and I plan around it.”
Susan says that “every Sjögren’s patient has a different symptom burden”. In her case, her worst symptom is fatigue, and that has worsened through the years. “My eyes and mouth are still dry—that’s always with me, but that’s tolerable. For me, there’s no getting around the fatigue.” She does not sleep well, as is true for many people with the disease.1
She explains how, for her, Sjögren’s disease causes two different types of fatigue. There’s a general level of fatigue that is always with her, but there’s also a more pressing fatigue that strikes her quickly and leaves her unable to do anything at all until she has rested. “I just have to listen to that kind of fatigue and do what it says,” she says.
“I can almost set my watch by when 11 o’clock comes because a feeling of fatigue comes over me and I need to sit down and rest. I need to take a break for a couple of hours and then see how my energy is after that.”
People who are not affected by fatigue themselves often find it hard to understand how debilitating it can be. “As much as family and friends want to understand it, they often don’t get it,” Susan says. Feeling able to say no to activities that others have organised is often difficult for Sjögren’s patients, she adds.
Fatigue is the area of her life where Susan has had to make the most adaptations. Susan presented a poster at the 2023 American College of Rheumatology conference about strategies that people with Sjögren’s disease can try to help them to manage their fatigue, so I asked her what tips she could share with the community.
“Attitude really is important,” she replied. “I think acceptance that you have to make modifications to your life is very important. I’m never going to feel like I did before my disease became active or like a 68-year-old person who doesn’t have any illness.” In her experience, the people who “struggle the hardest” with Sjögren’s disease are the people who don’t accept their illness and the need to make adaptations.
In the quarterly support group she has run in the Los Angeles area for the last six years—the Sjögren’s Foundation has about 60 support groups nationwide—there is a strong focus on positivity. “I think people go up and down on how they’re feeling and whether they need a support group or not,” she says. “The support group is really for anybody who wants to come. We talk about whatever anybody wants to talk about and share helpful tips, but no whining is allowed! It’s a way to help people feel less alone.”
“I think with any chronic illness there’s a tendency for people to become depressed and to feel like there’s so much that’s out of your control. I try to focus on what is in my control, including exercise, diet and pacing myself.”
Susan believes that “exercise lessens fatigue, plus you feel good about yourself when those endorphins start kicking in”. She tries to keep as active as possible, walking, running and using a rowing machine to try to keep her general fatigue in check.
She is also a strong advocate of the value of following an anti-inflammatory Mediterranean-style diet. “I feel better when I eat ‘cleaner’,” she says. “For me, when I don’t, my body aches—my arms, in particular, and sometimes my legs, like I’ve really overused them even when I haven’t.”
Although Susan enjoys cooking from scratch, she knows that there will be days when she doesn’t feel up to cooking, so she tends to cook larger portions so that she has something healthy waiting for her in the freezer.
“I’m always reading labels on products, and if there are ingredients that I can’t pronounce, I put it back because it’s something I shouldn’t be eating.”
Susan is careful to pace herself, knowing that her fatigue is worse if she over-schedules her days. It is the quantity of her tasks, rather than the physical intensity of any individual task, that contributes most to her fatigue, she says. This, she explains, is how the fatigue caused by her Sjögren’s is different to the physical tiredness that everybody experiences. In her experience, stress is another sure-fire way to exacerbate “all symptoms”, including fatigue.
Knowing that her energy levels are highest in the mornings, Susan tries to schedule priority tasks for then. “If I go running in the morning or have a doctor appointment, I don’t plan any errands or anything else for the rest of the day. I really try not to do more than one doctor appointment a day as that can be too stressful.” She says she rarely does evening activities—“I’ve just run out of steam by then.”
Smilingly, she recalls meeting with some of her “Sjögren’s friends” one evening after one of them had finished work—rather than for their usual lunch date—with predictable results. “At the end, we were all saying how tired we were, and how the only reason we had even come out in the evening was because we wanted to see each other so much.”
She advises others to pace themselves carefully and take account of the cumulative effect of over-scheduling. “It’s not necessarily the same day that I become fatigued. If I have two or three days in a row that are busy, I know it’s going to hit me harder the next day.” If other people can help with domestic tasks, so much the better, she says. For her, that conserves her energy for things she would much rather be doing.
When she travels, as she loves to do, Susan is especially careful. She prefers to keep her trips to a maximum length of 14 days, and she factors in a rest day before her itinerary begins; she also opts out of some optional trips and doesn’t plan anything for the week that follows. “For a week after I get home, I’m down for the count. I do my laundry and make a trip to the grocery store, and that’s it.” Although her disease has necessitated making these modifications, Susan is determined to keep doing the activities she loves.
Planning ahead: Susan has learned to always carry water with her, even if she is making a trip to the grocery store. For anything longer than that, she always carries a “go bag”, a little bag containing eyedrops and lozenges, and even little toothpicks. “When your mouth is dry, food gets caught easily, which is a nuisance if you’re eating in public.” When she is on a trip, she will also carry a lightweight foldable walking chair with its own carry bag, so that she can rest easily and conserve her energy. “I saw somebody else with it on a trip and that was just a really great discovery. “Small things like these are really helpful.”
As a patient, Susan’s focus is on the here and now, controlling the things she can control. If, however, she could change one thing about the future, “getting my fatigue under control would be wonderful”, she says.
As chair of the board of directors of the Sjögren’s Foundation, she also has an eye on the “unprecedented levels of ongoing research” into Sjögren’s, which she predicts will increase awareness of the disease and so increase the demand for the foundation’s services.
With the Sjögren’s Foundation having a staff of only 13 people plus volunteers, the work ahead could be intense. Whatever the challenges ahead, I am sure that Susan will be rising to them—pacing herself carefully—driven by a sense of duty and pride in the organisation’s work.
“As chair of the Sjögren’s Foundation board of directors, it is such an honour to be involved with an organisation that cares so much about this group of people that is largely forgotten.”
References
[1] Sjögren’s Foundation [Internet]. [cited 2023 Dec 13]. Patient Survey Results. Available from: https://sjogrens.org/understanding-sjogrens/resources/patient-survey-results
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