What It’s Really Like to Live With Psoriatic Arthritis

Dr. Ruderman stresses, “That is part of my job as a rheumatologist.” If he doesn’t know what’s important to his patients and what limitations are preventing them from thriving in certain situations, he says, “I won’t know that we need to adjust their therapy to make sure they are able to do those things.”

If you are in a work situation that isn’t making adjustments for you, talk to your rheumatologist about your options. They may be able to assist you in asking for a reasonable accommodation. Plus, as Dr. Ruderman says, “the goal of treatment in PsA is to try to avoid the need for such modifications.”

Psoriatic arthritis can even impact your relationships.

I have definitely tested the “in sickness and in health” portion of my marriage vows. While communication is key in any relationship, that’s especially the case when chronic illness is involved. “People often put others above their own health,” Dr. Lohr says.

“Uncertainty about one’s response to a medication and/or potential adverse effects, and having to adapt to a different life can lead to anger, guilt, grief, and frustration,” says Dr. Lohr. And these emotions are not limited to the person with the diagnosis. Chronic illness affects everyone in the family, and I know my husband can also feel cheated by the disease at times.

Jeni Lyn, a podcast host from Lima, Ohio, tells SELF that just knowing she’s not as physically active or as sexually active as she once was is stressful, and she’s grateful to be in a loving relationship. “Anyone could decide this is too much and they don’t want to be a part of it,” she says, “My husband is my biggest champion. I feel that we’re closer than ever.”

Illness can make you feel especially vulnerable. But those hard conversations that happen within an open, trusting relationship are some of the most intimate you will ever have.

Mental health matters—especially when you live with psoriatic arthritis.

The mental load that accompanies chronic illness and chronic pain is difficult to understand for those who do not experience it. “Pain gets you down,” says Lyn, who tells SELF she’s managed anxiety most of her life but wasn’t expecting prolonged sadness to accompany the pain when she first started living with psoriatic arthritis.

“Unfortunately, depression is a very real problem in psoriatic arthritis and rheumatoid arthritis,” Dr. Ruderman says. While it may seem that mental health is best addressed with the help of a different professional, Dr. Ruderman says it’s important to share this information with your rheumatologist, who can factor that into your treatment plan. This doesn’t mean that you can’t also seek out support from a licensed mental health professional or your primary care doctor, but your rheumatologist also might be able to help.

“I’ve felt guilty and ashamed because, yeah, I’m 47 years old and I’m acting like I’m 87, but that’s how old my body feels,” Lyn says. On Sundays when she’s filling up her pillbox for the week, she dreads adding more pills to her daily regimen. “I don’t even want to talk about depression to my providers yet because I don’t want to go on another medication.”

Navigating the physical and emotional toll of psoriatic arthritis is a challenge, and each patient will tackle this at whatever pace makes the most sense for them individually. When you have a systemic autoimmune disease, diagnoses can sometimes feel like they’re snowballing, and it takes everything you have to find your balance. If you can, talk to your rheumatologist about all the ways this disease impacts your life. They are not just there for bloodwork and X-rays.

“My goal is not to just improve some nebulous measures of disease activity,” Dr. Ruderman says, “But to improve my patient’s ability to function, and to do the things they want to do.”

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