5 Things You Need to Know About Living with Rheumatic Disease
Being diagnosed with a rheumatic disease is a life-altering experience that can feel overwhelming and intimidating. Rheumatic diseases, such as psoriatic arthritis, rheumatoid arthritis, lupus and scleroderma, are chronic conditions that affect joints, muscles and connective tissue. While they can bring about physical, emotional and logistical challenges, advancements in medical science and management strategies provide hope for individuals facing these conditions.
Today, experts emphasize that a diagnosis no longer comes with the inevitability of severe pain and disability, thanks to innovations in treatment and a deeper understanding of how lifestyle changes can help manage symptoms effectively. For anyone navigating life with rheumatic disease, it is vital to understand the medical breakthroughs but also the importance of holistic approaches to well-being—including mental health care, physical activity and community support.
Below, we explore actionable advice informed by medical expertise, designed to empower individuals to take control of their condition. From understanding individualized treatment options to dispelling common misconceptions, such as the belief that exercise should be avoided, we aim to demystify and inform what it truly means to live well while managing a rheumatic disease.
There’s no one-size-fits-all approach, but with the right guidance and support, patients can cultivate strategies to alleviate pain, reduce inflammation and foster a fulfilling, active life despite their diagnosis.
Exercise Is Key
Dr. Lou Bridges, a rheumatologist based in New York, says one of the most common misconceptions with rheumatic diseases is that patients with inflammatory arthritis, such as rheumatoid arthritis, should not exercise. But that could not be farther from the truth. “While it is true that patients should not perform exercises that may worsen their pain, there are many safe exercises for such patients, including water aerobics and low impact activities such as walking,” he says.
Additionally, appropriate lifestyle changes can make a huge difference for patients with rheumatic diseases. These include avoiding smoking, maintaining a healthy weight and eating a healthy diet.
“Evidence suggests that the Mediterranean diet, which has been shown to reduce cardiovascular disease, may have beneficial effects on rheumatic diseases,” Bridges says. For psoriatic arthritis specifically, it has been shown to decrease chronic inflammation that contributes to heart disease, type 2 diabetes, cancer and other conditions.
The Mediterranean diet is a healthy eating pattern that emphasizes fruits, vegetables, whole grains, beans and olive oil. It also includes fish, poultry and some dairy products in moderation and has limited red meat and moderate consumption of red wine.
Age Does Not Equate to a Rheumatic Disease Diagnosis
While a lot of rheumatic conditions are related to age, there is another misbelief that these conditions mostly affect older people and, as a result, are a product of getting older. However, that is not the case for all of them.
Psoriatic arthritis, for example, can develop at any age. Lupus, also, mostly affects women in their 20s.
“[Lupus] is a disease that has a higher mortality, but also other profound symptoms that greatly impact quality of life,” says Dr. Kaleb Michaud, a rheumatology professor based in Nebraska. “The more people knew about it, the more they’d understand it is a very serious condition.”
He adds. “Most of these conditions affect people in the prime of their life, and the arthritis, which is the most common associated symptom of rheumatic diseases, oftentimes, isn’t the main part of the diagnosis. In fact, the name arthritis that’s in a lot of these conditions is just part of the symptoms that come from pain in the joints; the inflammation and other conditions that come from these diseases are much more serious.”
Dr. Ashira Blazer, a rheumatologist based in Maryland, also highlighted that a number of rheumatic diseases disproportionately affect women of childbearing age. “Women tend to worry that once they get diagnosed with rheumatic disease, they won’t be able to carry a healthy pregnancy, but there are many ways for women with rheumatic diseases to carry healthy pregnancies,” she says.
To do so, the rheumatic disease has to be controlled (without flare-ups) for at least six months, and you have to take medications that are compatible with pregnancy. “As long as those two things are achieved, people with rheumatic diseases can have the same kinds of [pregnancy] outcomes as people who don’t have rheumatic diseases,” Blazer adds.
There Is a Strong Connection Between the Brain and Immune System
Being diagnosed with a chronic illness that potentially can cause damage to joints or organs can be very hard emotionally. That said, there are well known connections between the brain and the immune system. For example, stress and depression are known to have an impact on disease activity, Bridges notes.
He stresses that it is very important for each patient to seek support for their mental and emotional health, as having someone to discuss the psychological aspects of their diagnosis, treatment and prognosis can be extremely helpful. This can include patient support groups, mental health counselors, friends, members of the clergy and others.
“Patients can greatly benefit from long-term, stable relationships with spouses or partners who can support them by providing physical assistance such as help with daily activities,” he says. “It’s just as important to have a shoulder to cry on, someone to give you a hug, provide words of encouragement and help to find solutions to difficult challenges.”
Proper Health Screenings Are Crucial
The Centers for Disease Control and Prevention (CDC) provides information on when to get health screenings for certain conditions (e.g., lung screenings and colon screenings), but for those with rheumatic diseases, preventive care may be more crucial than for patients without rheumatic disease.
“Each patient should continue to receiving age appropriate, recommended health screenings,” says Bridges. “But because some rheumatic diseases are associated with increased risk of cardiovascular disease, screening for cholesterol levels is even more important in rheumatic disease patients than for the general population.”
The Outlook Is Better
Rheumatic diseases don’t have to cause disability.
It’s a concern Blazer has seen during her tenure. “When people get diagnosed, they’re very fearful that eventually they’re going to lose the use of their hands or joints,” she says. “In the era of disease-modifying antirheumatic drugs (DMARDs)—especially biologic DMARDs, which are the more advanced therapies that are targeted—we find that people can live pretty normal lives with rheumatic diseases.”
“We’re learning the mechanisms behind rheumatic diseases at a fast rate,” she adds. “So, we’re starting to understand the different mechanisms in the immune response that promote inflammation, and we’re able to target very specific mechanisms. Because of that, the medicines that are coming out are much more targeted, particularly the biologic medications, and are less likely to cause the same kinds of side effects.”
Bridges agrees, saying that while choosing which specific drug for each person is still often challenging, doctors are making headway and identifying which patients might respond best to particular drugs. “We are developing new strategies for patients with refractory diseases such as lupus or scleroderma. These involve so-called cellular therapies, which may currently be difficult to administer and expensive, [but] they could point the way to more effective ways to treat rheumatic diseases in the long-term.”
He adds, “With more effective treatments and management strategies, the long-term outcomes of patients continues to improve, and as more and more therapies are developed, the proportion of patients with ongoing, active disease continues to decrease.”
