Psoriatic Arthritis: Expectations vs Reality

We go to our doctor appointments. We take our medicine. And we expect to feel better. But what happens when we do all that, and we don’t feel better?

Managing expectations with psoriatic arthritis

It still takes hours to get moving in the morning. Our fingers still swell up the sausages and the overwhelming fatigue keeps us from our favorite activities. Our initial optimism turns to disappointment and the reality of life with psoriatic arthritis threatens to overwhelm us.

When I started treatment, I fully expected to be able to pick up my life right where I left off. I expected to be an amazing mom for my kids. I expected to be able to go back to teaching full time and running my household. Perhaps not with “ease,” but still, I thought that within a month, maybe two, I’d be okay.

This is what happens when our expectations of treatment don’t meet the reality of treatment outcomes.

When expectations meet disappointment

The reality of my experience is that unless you meet the requirements of a best-case scenario, it can be extremely tricky and unrealistic to find a medication that helps treat our disease in the way we initially expect it to.

When it came to my own best-case scenario, I really had the cards stacked against me. Similar to many patients with PsA, it took years of living with symptoms before receiving an official diagnosis. Despite the fact that every single study shows that early diagnosis and treatment is best. Once I was diagnosed, I was already labeled “moderate to severe.”

Reality trumps expectations

On top of the fact that as many of my partners in crime, PsA was not my first autoimmune diagnosis. I was already diagnosed with Hashimoto’s Thyroiditis which meant that I wasn’t necessarily in “good health” when I was diagnosed either. Another indicator that I wouldn’t fall into the best-case scenario situation.

Not to mention the mere fact that I’m a woman. According to rheumatologist Ana-Maria Orbei, at Johns Hopkins Medicine: “Women are less likely to achieve remission in their disease and don’t respond as well to certain treatments.”

Ugh. Seriously? Yep, I hate to be the bearer of bad news ladies, but there it is.

Treatment expectations

So what does all this mean? Is the entire outlook for life with PsA gloom and doom? Should all of us who don’t fit into the best-case scenario just throw up our hands and give up the fight? Heck no! But we do need to adjust our expectations of treatment to more closely align with the reality of our prognosis with treatment.

I spent years trying treatment after treatment with at best, marginal success. The whole time expecting that I would have some miracle moment of recovery and remission. I fully expected that every new medicine would come along like the proverbial golden ticket that would win me my old life back.

In all things, there is a balance

If someone had told me at my diagnosis that all those percentages of people who responded were the best-case scenario then I could have been better prepared. Perhaps, if someone told me that the commercials weren’t necessarily indicative of what my reality would be then perhaps I wouldn't be so infuriatingly let down by the whole process. If someone had just told me…

I’ll be the first to shout out that we need balance in all things. We need to educate those newly diagnosed so that they can have accurate expectations for treatment while simultaneously offering support and guidance necessary to make the most of the advances in treatment that are available to us.

Setting realistic expectations with psoriatic arthritis

I can’t change my gender. I can’t change the fact that I was diagnosed with moderate to severe disease progression years into my PsA. But I can learn about all my current treatment options. I can educate myself about the relationship between nutrition, exercise, and inflammation.

Overall, I can work to try and stack the PsA deck a little more in my favor. I can look at the entire picture and close the Grand Canyon-sized gap in my expectations for treatment versus the reality of my treatment outcomes.