You may feel like your entire life changed without warning after getting diagnosed with psoriatic arthritis. And you might have a million questions about managing psoriatic arthritis, or you may feel completely numb. And throughout your experience, you could encounter challenges that you did not anticipate.
Psoriatic arthritis is an inflammatory disease that causes joint pain, swelling, fatigue, and stiffness, all of which can be really debilitating, according to the Mayo Clinic. Your medical team will ideally provide guidance and help you develop a treatment plan that works for you. However, one of the best ways to learn about managing your condition is by asking other people with psoriatic arthritis for their insight about what was most helpful for them. SELF spoke to four people with the condition to find out what they wished someone had told them. Here’s what they think you should know about managing psoriatic arthritis.
1. Finding a care team that makes you feel comfortable, heard, and validated is essential.
Many people with psoriatic arthritis see a rheumatologist to treat their condition. (Some individuals also may see a dermatologist if they have psoriasis, an autoimmune condition common in people with psoriatic arthritis that causes itchy, painful, scaly patches on the skin.)
If you feel like your doctor doesn’t really listen to your concerns or your physician says something that doesn’t reflect the research you’ve done on psoriatic arthritis, then it’s a good idea to speak up or seek a second opinion. Tami Seretti, 54, who was diagnosed with psoriatic arthritis in 2008, says that she experienced joint pain in her ribs and thought it might be caused by enthesitis, which happens when soft tissue is inflamed at the site where it enters the bone, according to the Mayo Clinic. However, Seretti’s rheumatologist dismissed enthesitis as a possible explanation for her symptoms even after she showed them a study indicating that it commonly occurs in people with psoriatic arthritis. Now, she is searching for a rheumatologist and sees a pain management doctor, a primary care physician, and a dermatologist to treat her psoriatic arthritis and psoriasis. She also speaks freely with her general practitioner about monitoring for psoriatic arthritis comorbidities, such as cardiovascular disease.
Finding a doctor you like can take some time. Outside of getting referrals from family, friends, or physicians, you can check the advocacy group National Psoriasis Foundation’s directory of dermatologists and rheumatologists for practitioners who are experienced in treating psoriasis and psoriatic arthritis.
2. Finding the right treatment can take trial, error, and persistence.
There are many treatments available that can control psoriatic arthritis inflammation and minimize joint pain and damage. However, you may need to try several different medications before you find the one that works best for you, says Jody Quinn, 62, who was diagnosed with psoriatic arthritis in 2003. For years, Quinn says she cycled through medications because each would only improve her symptoms for a few months. Sometimes this happens, which understandably can make you feel hopeless. Although Quinn’s current medication has effectively treated her psoriatic arthritis for three years, she can’t help but worry. “I still wake up every day wondering if today is the day it stops working,” she tells SELF. (Treatment options include biologics and immunosuppressants. Keep in mind that your treatment options may change over time based on new research and newly available therapies. Make sure you have ongoing conversations with your doctor about which treatment options may be best for you.)
One of the realities of treating a chronic condition is that your medication options are partially dependent on your insurance plan if you have coverage. There may be times when you have to petition your insurance company to authorize a specific medication, says Jenn Pellegrin, 38, who was diagnosed with psoriatic arthritis in 2008.
“A lot of people get discouraged because the insurance company says, ‘No, you can’t have this medication,’ but they don’t realize they can petition the decision,” Pellegrin tells SELF. Talking to your insurance company can feel daunting when you’re already dealing with so many other health-related things. But Pellegrin encourages people not to give up, because she has had success in getting her medications approved. For help on getting medication authorized, you can speak to the staff at your doctor’s office who are typically well-versed in dealing with insurance, or you can contact the National Psoriasis Foundation for assistance. (They also have advice on their website for how to appeal an insurance decision.)
3. Know that needing to rest doesn’t make you lazy.
One of the less-discussed challenges of living with psoriatic arthritis is dealing with other people’s reactions. People who don’t live with a debilitating chronic condition may not fully understand how it can impact your life, which might lead to hurtful assumptions. For example, some people might say things that make you feel guilty about needing to rest when you’re fatigued, says Wendy Riese, 43, who received her psoriatic arthritis diagnosis in 2011.
Riese teaches pre-kindergarten, which can be exhausting enough on its own. But with her psoriatic arthritis, Riese sometimes naps when she gets home from work just so she has enough energy to get through the evening. “People will comment ‘Oh, I wish I had time to take a nap.’ Or people might say napping is lazy, but sometimes I don’t have a choice,” Riese tells SELF.
Pellegrin says that as a plus-size woman, she has experienced weight bias and ableism from others. She recently graduated from nursing school but was previously a cake decorator and regularly worked at events. On those nights, Pellegrin says she would be exhausted and in a lot of pain. But instead of stopping to rest at work when she needed to, she would push through and deal with the discomfort because she was worried that others might think she was lazy. Now, Pellegrin puts her comfort above other people’s opinions and tries to have an open conversation when people have questions about her condition or make comments.
“Educating people when they jump to conclusions is something I wish I had learned early on, instead of feeling bad and sorry for myself,” Pellegrin says. Give yourself the grace in knowing that managing psoriatic arthritis in a way that works for you isn’t a mark against your work ethic.
4. Connecting with people who have psoriatic arthritis can help you feel understood.
The value of advice and empathy from people who know exactly what you’re going through cannot be overstated. Thankfully, it’s easy to connect with others through Facebook groups or other social media platforms. You can search for “psoriatic arthritis” on Facebook to find groups such as the Psoriatic Arthritis Support Group, which has 21,000 members. Or you can look up hashtags such as #PsoriaticArthritis, #ArthritisWarrior, and #ArthritisAwareness on Instagram to find people talking about their condition online.
If you have the time, volunteering with a psoriatic arthritis advocacy group can help you connect with others and maybe even give you a new sense of purpose. This was the case for Seretti, who tells SELF that volunteering with the National Psoriasis Foundation helps her cope with her inability to work due to her diagnosis. “I haven’t completely accepted that I’m technically disabled,” she says. “But the advocacy and the volunteering gives me something to do and makes me feel useful,” Seretti explains.
5. Be mindful of your limits whenever possible.
One frustrating aspect of living with psoriatic arthritis is that you just don’t know how you’ll feel on a given day. To help manage this unpredictability as much as possible, Pellegrin writes a list every night of two or three simple things she wants to get done the following day. (Tasks might be sending an email, buying milk, or putting away one bit of clutter.) That way, even if her psoriatic arthritis prevents her from doing bigger tasks, Pellegrin feels proactive.
“It’s been a hard lesson to have grace with myself. I have had to learn that not everything is going to happen the way I want it to,” Pellegrin says.
Additionally, she doesn’t push herself to be active when she’s not feeling well. “There were times when my friends would invite me out, and I’d be so miserable because I was in pain,” Pellegrin says. “I finally realized that I could say no. I should not feel guilty for listening to my body,” she says.
Chronic conditions don’t go away. But the right treatment, along with advice and support from people who have similar experiences, can help you find ways to make living with psoriatic arthritis more manageable.