Living with psoriatic arthritis can present new experiences and challenges for everyone who faces this chronic inflammatory disease. It can help to lean on others who are going through the same journey, because a network of social support allows for shared insights.
Five community members of MyPsoriasisTeam joined the network’s first live member panel on May 11 to discuss how they navigate life with psoriatic arthritis. Casey Cronin, MyPsoriasisTeam’s director of community partnerships, joined MyPsoriasisTeam members NessaNessa100, BethACooperDavis, TerriThompsonNeby, DonnaHarrington, and doctorbob for a lively, hour-long conversation about life with PsA.
Check out the full conversation in the video above, and read the highlights below that show how these members manage their PsA symptoms and treatments.
Some of the MyPsoriasisTeam members who participated in the panel noted that it took a while to find the right resources to deal with their diagnosis. When NessaNessa100 initially had symptoms, the first doctor she visited didn’t take her seriously. She trusted her instincts and went to a different physician, who helped her figure out what she was experiencing.
“I've had a long journey with a lot of medications, a lot of ups and downs, highs and lows with the emotional, physical, and mental,” said NessaNessa100, who has dealt with psoriasis and psoriatic arthritis for over a decade. “Right now, I'm on excellent medicine. I have an excellent medical team. I've joined MyPsoriasisTeam, which has been tremendous. The National Psoriasis Foundation has also been a major help.”
All of the participants noted that it took some false starts before they tried the right medications for them, since different drugs work in unique ways for each person.
DonnaHarrington was diagnosed with PsA in 2000, and she had to leave her career as a surgical nurse due to the symptoms. She has tried a wide variety of medications with varying degrees of success, but she expressed gratitude for the fact that she has treatment options. “I still can't get out and walk like I would like to, or dance like I would like to, but all in all, we get up, we make it through the day,” she said. “The swelling and inflammation are down significantly, and we just have to keep trying and be thankful every day that these biologics work.”
Several of the panelists were surprised by the reactions of family and friends when they initially revealed a PsA diagnosis. “I understand that people can fear what they do not understand, but the whispers, the jokes — the meanness of it, instead of showing compassion and care,” said NessaNessa100. The invisible nature of psoriatic arthritis can make it hard to explain to others, she noted. “This disease … is a monster that you hide from, and it's a monster that makes you hide from everything, from people, yourself, from your work,” she said. “It's amazing how quickly I went from 100 to zero because of a disease.”
Family and friends often try to suggest solutions that might work for someone without PsA, but which aren’t always realistic for people who have the disease. “It can be a real struggle, both with your spouse and with your friends,” doctorbob said. “They don't understand when you tell them you've got fatigue today and you just don't feel well, and they’ll say, ‘Go take a nap, you'll be fine.’ No, that will not solve the problem.”
BethACooperDavis agreed that it can be hard for others to understand because they can’t always see what you’re going through. She has faced accusations that she was simply seeking painkillers, because people in her life didn’t understand the level of pain she was facing. “My body was disintegrating. I would rather go through 48 hours of labor — that was nothing compared to what I went through with this,” she said. “Other people did not comprehend what was going on inside my body.”
This can be particularly true when others point to outside appearances and say you don’t look sick with PsA. “People say, ‘Oh, but you look good,’” DonnaHarrington said. “So if you don't look ill, they cannot possibly understand the fatigue or the pain, the fact that you can't make plans weeks in advance because you don't know how you're going to feel on that given day. And it is very hard.”
Fortunately, many health care providers realize that people with PsA are dealing with very real pain. During one of TerriThompsonNeby’s doctor appointments, her rheumatologist told the residents in the clinic that if they woke up in TerriThompsonsNeby’s body, they would go right to the emergency room due to how severe the pain of PsA can be.
NessaNessa100 believes that because PsA symptoms aren’t immediately obvious to outsiders, it creates a stigma around the condition. “If I could just get people over the stigma of this, that would be so awesome, because when people stigmatize you, they limit your chances of being helped, being cared for, being loved, being understood,” she said.
NessaNessa100 got so accustomed to people questioning why someone as young as she is would need a cane that she began carrying pamphlets about psoriatic arthritis with her so she could educate others.
One thing doctorbob wishes he’d known at the beginning of his PsA journey involves the unexpected symptoms inherent to PsA. “You get up in the morning, you look in the mirror, and you've got one eyeball that's totally red,” he noted. In addition, he didn’t foresee the type of pain he would later experience from enthesitis, which involves inflammation at the location where ligaments or tendons meet the bone. “In my experience, that's maybe even more painful than the joints,” he said.
DonnaHarrington also pointed to some of the unexpected symptoms that can add to the stress of the PsA journey. “I had no idea of the fatigue and the depression that were associated with it,” she said. “So it's a learning experience as you go along and all the other symptoms start to come forward, and you have no idea that it's related to psoriatic arthritis.”
For NessaNessa100, it was a real moment of clarity when her rheumatologist told her that PsA could affect her vision, joints, tendons, muscles, and other body parts. “We know that we might not get all these problems and all these symptoms, but they're common. One or two will come and hit you, and it's not like you get a warning,” she said.
Overall, the MyPsoriasisTeam members who participated in the discussion stressed the importance of finding out what works for you and going easy on yourself.
“Stay positive no matter what, even when it's really hard,” TerriThompsonNeby said. “If something's not working, do your research, try something else. Just keep pushing through. And if you can't move and you don't feel well, give yourself a break. Take care of yourself. Keep your mind occupied, and just be your favorite advocate for yourself.”
BethACooperDavis reminded others how essential it is to listen to your body. “Be aware of what causes your flares so that you can avoid having a flare,” she said. “Could it be diet? Could it be environment? Could it be the weather? So it's just being aware of things.”
When doctorbob began tracking his PsA triggers, he realized following the Mediterranean diet helped ease his symptoms. After cutting out inflammatory ingredients, he began to notice that his symptoms improved. “I mostly eat fruits and vegetables,” he said. “I allow myself to eat beef, lamb, or pork once a month. I try to consume seafood at least once a week, but I live in the desert and seafood’s hard to come by. I swear, it makes a big difference.”
A strong mindset, a sense of humor, and a strong support network were universally noted as being key to staying positive. “We know there's no cure at the moment, but keep the faith,” doctorbob said. “I know there's one out there for us.”
MyPsoriasisTeam is the social network for people with psoriasis and their loved ones. On MyPsoriasisTeam more than 92,000 members come together to ask questions, give advice, and share their stories with others who understand life with psoriasis.
What has your psoriatic arthritis journey been like? Share your experience in the comments below, or start a conversation by posting on MyPsoriasisTeam.
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