Psoriatic disease affects women physically and emotionally.
By Heather Johnson Durocher
It’s the simple, everyday tasks that can prove particularly frustrating for Jaime Moy, a Detroit, Michigan–area mom who lives with psoriasis and psoriatic arthritis.
“It’s very difficult when you’re the type of person who is used to doing everything you can to help other people and you’re put in a position where you have to ask for help,” says Jaime, who learned she had the autoimmune diseases about 10 years ago. “It’s not an easy thing to do—I still struggle with that now.”
Though she tries to stay as active as possible—she enjoys kickboxing and walking with friends—swollen joints sometimes prevent her from doing these activities and interfere with her ability to take care of her family the way she’d like.
“I feel like I don’t want to put too much burden on my family. I don’t want to have to ask my husband to drive me up to the store or carry a load of laundry downstairs,” she says. “It’s in my nature to be independent.” Although, she adds, “those times when I really can’t do those things, my husband and son are very supportive.”
What Are Psoriasis and Psoriatic Arthritis?
According to the National Psoriasis Foundation, psoriasis is a non-contagious, chronic autoimmune disease that causes red, raised, scaly patches to appear on the skin. It occurs when the immune system sends out faulty signals that speed up the growth cycle of skin cells, causing layers of skin to accumulate.
Psoriasis is the most common autoimmune disease in the United States, affecting as many as 7.5 million Americans. It’s been linked to other serious health conditions as well, including cardiovascular disease, diabetes, and depression.
About 30 percent of people with psoriasis develop psoriatic arthritis (PsA), which, like psoriasis, can range from mild to severe. Most people first develop the skin symptoms of psoriasis and later develop symptoms of PsA—though in some cases arthritis symptoms can appear in advance of the scaly skin patches characteristic of psoriasis.
Psoriatic arthritis can develop at any age, but it most commonly appears between the ages of 30 and 50. Genes, the immune system, and environmental factors are all believed to play a role in the onset of the disease, according to the National Psoriasis Foundation.
There is no blood test to determine whether someone with psoriasis will develop PsA, says Elaine Husni, MD, MPH, member of the National Psoriasis Foundation’s Medical Board and a rheumatologist at the Cleveland Clinic. “We don’t have very solid clues,” she adds. Dr. Husni recommends that patients diagnosed with psoriasis have regular follow-ups with a dermatologist to discuss changes in their health.
Dr. Husni says that psoriasis patients will want to be especially aware of symptoms of PsA, such as sausage-like swelling along the length of their fingers or toes (called dactylitis) and joint and back pain that lasts for more than six weeks. Achilles tendonitis or “tennis elbow” also may signal PsA in those who already have psoriasis, she adds.
If these symptoms develop, it is important to talk with both a dermatologist and a rheumatologist, says Arthur Mandelin II, MD, PhD, assistant professor of medicine in the Department of Medicine, Division of Rheumatology, at Northwestern University Feinberg School of Medicine in Chicago. Including both specialists early on as symptoms develop can help ensure that patients receive optimal care, Dr. Mandelin says, because the physicians can compare notes and work hand-in-hand on treatment options.
Physical Symptoms Take an Emotional Toll
For Jaime Moy and other women who have psoriasis and PsA, managing these diseases means coping with fluctuating physical and emotional issues related to the condition. The swollen, painful joints characteristic of PsA and the itchy, uncomfortable skin that marks psoriasis are often paired with inner turmoil for women facing these diagnoses, especially as they confront others’ lack of knowledge of these diseases.
“Unfortunately, psoriasis is not well understood by the public in general,” says Dr. Mandelin. This lack of awareness, especially concerning the outward appearance of the disease, can lead to hurt and embarrassment for patients who experience others’ reactions to their appearance. “People don’t understand that it’s not contagious,” Dr. Mandelin says.
The lack of understanding about the disease among the general public leads women, in particular, to struggle emotionally in the face of a psoriasis diagnosis, according to the National Psoriasis Foundation. One reason is because women can feel heightened pressure to conceal the psoriasis patches that appear on their skin.
“I believe that women are more cosmetically sensitive to psoriasis,” says Dr. Husni. “They tend to worry more about the appearance of their lesions.” And, she says, the visible symptoms of PsA can cause similar distress: “Psoriatic arthritis affects things beyond the joints—swollen fingers and toes, sausage-like swelling, a lot more nail changes.”
Jaime Moy, who serves as a National Psoriasis Foundation community ambassador, agrees that women are affected differently than men by the symptoms of psoriasis. “In general, there’s more pressure on women to look a certain way in society, and I think that plays a big role for many women when psoriasis shows.” It can be especially tough, she says, in situations like swimming in public, where skin is on display, causing many patients to question whether the activity is worth the emotional toll: “It’s not easy. You do stop and think, Do I want to subject myself to the stares, the criticism, the don’t-come-near-me-you’re-contagious reactions? Or is it just easier to not go to the pool, not go out in public, not wear short-sleeved shirts?”
Psoriasis, PSA, and Pregnancy
For women of childbearing age, psoriasis and psoriatic arthritis raise unique considerations.
Pregnancy can be a tough time for women with these diseases, says Chris Jones-Wollerton, a mother who lives with psoriasis and PsA who is also a certified birth doula, a certified postpartum doula, and a board-certified lactation consultant.
“Imagine if you’re covered with psoriasis during childbirth; not only are you dealing with the fetal monitoring belt but you’re hampered in terms of movement and positions,” Jones-Wollerton says.
PsA brings its own challenges to pregnancy: “If a mom has psoriatic arthritis and is having trouble just getting around in general because of discomfort in the spine or in hands or feet, she is going to find pregnancy very difficult,” she says.
Beyond the physical reality of managing the limitations that psoriasis and PsA might cause during pregnancy and childbirth, Jones- Wollerton says that some women struggle with even the idea of motherhood in the face of the diagnosis.
“When I first became a member of the National Psoriasis Foundation, one woman I was in touch with said she planned to never have children because she was so uncomfortable with her body and was worried about going off her medication—she felt [that remaining on her medication] just really outweighed the benefits of having children,” Jones- Wollerton says.
For women who do want to have children, she says, one major consideration is the role of treatment during pregnancy. “There will always be the big questions about medication during pregnancy—it’s a hard decision,” she says. “You want to make the choices that are safest for your baby, but you also need to manage your disease.”
Dr. Mandelin says that while some medications are known to be too dangerous to use during pregnancy (Trexall® [methotrexate], for example, is often prescribed for psoriasis but can potentially cause birth defects), other treatments are safe and can provide symptom relief both when a woman is expecting and during breastfeeding. He notes that because research findings are limited, however, “the safety data for pregnant women with psoriasis and psoriatic arthritis are not perfect. It all becomes shades of gray and degrees of risk—it is a very individualized choice.”
Dr. Mandelin advises women who are considering treatment and discussing options during pregnancy with their care team to take into account their disease burden. Questions to guide a conversation with a physician might include: “What would be the consequences if we did nothing? If we removed medication?”
Ultimately, Dr. Mandelin says, treatment options should be an ongoing discussion throughout pregnancy.
While there is no clear reason why this happens, some women find that the autoimmune disease goes into remission during pregnancy. Others experience worsened symptoms. The fluctuating and highly individual nature of the disease makes it especially important keep in touch with not only an OB/GYN but also a dermatologist and a rheumatologist throughout pregnancy and postpartum, Dr. Mandelin says.
“Just a Small Part of My Life”
Living with psoriasis and PsA means finding ways to best manage the diseases, patients say, recognizing potential triggers and coping with symptoms as they arise and change.
“For a long time, both of the diseases were really well controlled. It wasn’t until about three years ago that I had a big flare,” says Jaime Moy, who has tried Trexall as well as the biologics Humira® (adalimumab) and Enbrel® (etanercept). Jaime says she is doing better now and has learned to recognize at least one thing that she believes will bring on a flare: “For me, stress is a big trigger.”
To help keep her stress level as low as possible, Jaime attends twice-weekly kickboxing classes. “It’s great to get out stress,” she says, adding that “there are days when I go in and I can’t punch anything. My joints hurt too much.” On those days she does shadow boxing, which entails punching air rather than bags or her mitt-wearing instructor.
For Jaime staying active has been essential in maintaining her emotional and physical wellness. “If I don’t stay active, my arthritis is worse—a lot worse,” she says. “I do it to release stress, for the company of friends; I do it to feel better. I am going to hurt whether I’m sitting on the couch or I’m out on a walk. I might as well get some fresh air and sunshine. When I get back home, I might have to get out the ice and put it on my knees, but sometimes you don’t know the next chance you will get to do this.”
Beyond her commitment to staying active, Jaime strives to keep the diagnosis in perspective and focus on the big picture. “It’s just a small part of my life, and it’s not the only part of my life,” she says. “There’s so much more to me than just psoriasis and psoriatic arthritis.”
Jones-Wollerton, who has three children, says her psoriasis and psoriatic arthritis can be disabling at times, but she too is committed to living a full, happy life despite the diagnosis. “I am trying to live my life as best as I can. I am not going to let psoriasis or psoriatic arthritis dictate what I’m going to do as a woman, as a mother,” she says. “I’ve had to adapt my parenting style, and it can be difficult at times, but I wouldn’t change a thing. There are so many things out of our control that we can’t change about our disease, but we can control how we view ourselves and the type of support we can get.”
Pregnancy and Psoriasis and Psoriatic Arthritis
Women diagnosed with psoriasis and psoriatic arthritis during the childbearing years may benefit from the following tips, provided by Chris Jones-Wollerton, a certified birth doula, certified postpartum doula, and board-certified lactation consultant.
Begin researching how best to support a healthy pregnancy as early as possible.
Consider how pregnancy may affect the psoriatic disease.
Make decisions about treatment for the psoriatic disease during pregnancy based on current, evidence-based information with the understanding that you may have to look beyond mainstream resources.
Just as you must be an educated consumer in other aspects of your life, the same is true for the management of psoriatic disease. If you choose to become a parent with psoriasis, being an educated consumer is more important than ever.
Consider consulting with a doula (a trained labor and postpartum assistant) for educational, physical, and emotional support during your pregnancy, labor, and postpartum. A doula can help you create a birth plan that includes comfort measures for psoriasis or psoriatic arthritis.
Ask questions about your hospital’s policy regarding the restriction of movement during labor. Some hospitals will allow intermittent fetal monitoring and the use of a Hep-Lock (also known as a saline lock) to allow freedom of movement during labor.
Lifestyle Modifications Can Make A Difference For Women Living With Psoriasis And Psoriatic Arthritis
Chris Jones-Wollerton offers up some basic tips and strategies for living well with psoriatic disease.
Experiment with clothes that allow you to feel comfortable and confident, no matter what the weather forecast. If arthritis is in your hands, avoid outfits that are tight-fitting or need to be tied or buttoned. Wear shoes that do not constrict or otherwise hurt your feet.
There are many assistive devices that can really make a difference, inside and outside the home. For example, a toilet seat riser allows you to sit down with more ease, relieving pressure on your legs and tailbone. (This can also help postpartum moms.)
A curved leg pillow can be used between your thighs or knees to better align your hips, decreasing joint pressure so you wake with less pain. Ergonomic pillows for your head and elevated cushions for your feet may also be helpful.
Try to place most used items such as dishes and cups on shelves or counters between your waist and eye level to avoid bending down too low or reaching too high.
Use a high-quality baby carrier for babies and toddlers, especially when strollers are not practical.
Consider using a bath chair in the shower. Don’t feel confined to old-fashioned hospital-style bath seats. New styles, such as round stools that swivel, can be very helpful.
To save your wrists and hands, use a shopping bag handle when you need to carry several bags of groceries into the house.
Use an ergonomic pillow seat in your car to relieve pressure on your tailbone and soft seat belt covers that prevent rubbing your sensitive skin.