4 Emotional Challenges of Living With Psoriatic Arthritis

I often wonder how different my life would have been if, after giving me a diagnosis of psoriatic arthritis (PsA), my doctor had also given me a referral to a psychiatrist or psychotherapist. To say I was unprepared for the emotional rollercoaster of life with this chronic disease would be an understatement, especially since many of these emotional challenges repeat themselves as time passes.

When I was diagnosed with psoriatic arthritis, all I wanted was to function as I did before. I didn’t want to rely on others. I thought I could overcome this disease with enough willpower and treatment, but life with psoriatic arthritis is much more complicated than that.

Here are four of the most emotionally challenging aspects of living with psoriatic arthritis–and my tips for dealing with them.

After my diagnosis, I feared many things. However, most of my worries centered on the future, my independence, and my pain levels.

While I get that everyone’s future is uncertain, having a destructive illness takes that uncertainty to another level. My friends and I used to joke about getting older and having walker and wheelchair races. I no longer found that humorous when I went to purchase my first rollator (a walker with a seat) in my mid-thirties.

I feared not being able to care for my children or myself. Would psoriatic arthritis force me to give up driving? What if something happened to my husband? Would I be able to support us?

Waking up with pain every single morning filled me with fear. Would I be able to reduce it enough to get through the day?

Before psoriatic arthritis, I was carefree and always up for an adventure. I loved exploring and going to new places. I swore my diagnosis was not going to change that. But it did.

Pain in my feet and spine made walking extremely difficult. My anxiety about an outing would begin before I even left the house. How far would I have to walk between our car and destination? Would we be seated near the restrooms? And because PsA affected my balance, I worried about walking between tables. The last thing I wanted to do was to fall onto someone’s lap or dinner.

I hoped my anxiousness surrounding mobility would ease up after I began using mobility aids like a walker and wheelchair, but it only got worse. Would there be enough room in the aisles for my chair? Just how accessible would the restroom really be? What would happen if I flared while out and needed to leave early?

Unaddressed, anger began taking over my life. I was angry with my body for allowing this wretched illness to take over. Living with pain wasn’t fair. I compared myself to how I used to be, and couldn’t accept how everything had changed. Every time I had to cancel on a social event or spend an hour stretching before I could run errands or ask for help with something I once did with ease, my frustration grew. As my anger festered, my desire to be around others decreased. The happy-go-lucky attitude that used to draw people to me was replaced with a repelling bitterness.

Without realizing it, I lived my first decade with psoriatic arthritis in mourning. Dealing with fear, anxiety, and anger were all stages of grief. I never considered grieving to be a normal reaction to a chronic illness diagnosis.

Of course, I cannot imagine anyone jumping for joy after receiving their PsA diagnosis. Sure, some people may be happy to finally have a diagnosis, but I guarantee they aren’t thrilled by the prospect of living with it the rest of their lives. But grief? I associated grief with the death of a loved one. I didn’t realize I’d find myself grieving the life I thought I would live, filled with experiences and adventures my diagnosis threatened to take away or significantly change.

PsA will create new limitations throughout our lives that leave us longing for the life we had yesterday. When we recognize we are experiencing grief, at least we understand why we feel the way we feel–and why these emotions have lasted so long.

Once acknowledged, you can reduce the effect of each of these emotional challenges. The first thing to do is educate yourself the best you can about PsA and how it affects the body. Talk to your doctor about various treatments that may slow down the progression, and ask for guidance on any resources or tools you may not be aware of.

Secondly, talk to your family–and a professional. Find a psychiatrist or mental health counselor and include your loved ones in your sessions. Psoriatic arthritis affects my entire family, not just my body. Living with it becomes a family affair. I turned to therapy when I hit rock bottom, physically and emotionally. Pain made it difficult to communicate my needs. I wanted to find ways to express them without feeling like I was being too demanding or a burden. Through therapy I was shown how to do this in a manner that my family would be receptive to. It made all the difference.

When it comes to anxiety about social activities and events, I realized how helpful it was to take charge by planning ahead. Research destinations online. View photos of restaurant interiors online to see if it is a place you would feel comfortable. Call ahead and ask about accessible accommodations. It’s brought me immense joy to identify a few go-to restaurants where I know I’ll feel safe and supported. And, of course, find tools that can alleviate the stress. For example, if walking is also an obstacle for you, ask your doctor to help you apply for a disabled person parking permit so you can avoid trekking across the entire parking lot.

Life with psoriatic arthritis will always have challenges, but the emotional impact can be less devastating when we include mental health care into our illness management plan. Working with a mental health professional and facing your emotions can help you accept your life as it is, process challenges in a healthy way, and allow you to get the assistance you need.