Unmasking the Frustration and Lack of Awareness of Psoriatic Arthritis

When I was diagnosed with psoriatic arthritis (PsA) two decades ago, I never imagined the misconceptions and dismissive responses I would encounter from well-meaning friends, family, and even popular media. "Oh, thank goodness you don't have rheumatoid arthritis!" was a common refrain, as if PsA was a mild inconvenience. Some would laugh it off, asserting that PsA is just "a little arthritis." And then there was the soap opera character, whose nonchalant response to a potential PsA diagnosis left me stunned.

I chose to write about this topic to give myself and other PsA patients permission to feel the full spectrum of our emotions, including sadness and anger, about our diagnosis. PsA might not be a terminal illness, but it is far from a minor ailment. Let’s take a look into the frustrating misconceptions and unrealistic portrayals that PsA patients face and aim to shed light on the painful, debilitating, and potentially severe health consequences of PsA.

What are the most common misconceptions?

The general public often misunderstands PsA. Many assume it's merely a skin condition or a milder form of arthritis. In reality, PsA is a full-body disease with symptoms extending beyond psoriasis and joint pain. It can affect the spine, tendons, ligaments, and other body parts, causing inflammation, pain, and disability.

How does it make us feel?

The frustration arises from these misconceptions. People often downplay the severity of PsA, thinking we are overreacting when we seek help or have to cancel plans due to a flare. It leaves PsA patients feeling like they must prove the severity of their condition, often at the cost of debilitating pain and fatigue. Daily activities, such as hugging our children, can become painful, and even simple tasks like cleaning the house can trigger a flare.

How did a soap opera misrepresent PsA?

A few years ago, a soap opera character's reaction to a potential PsA diagnosis shocked me. Rather than reacting with the concern that a chronic illness diagnosis deserves, the character dismissed it, saying, "No big deal, I can handle a little arthritis." This portrayal not only failed PsA patients but also perpetuated the misconceptions surrounding the condition.

The reality is far from a trivial "little arthritis." PsA can have profound physical, emotional, and social consequences. Pain and stiffness are everyday companions, affecting one's ability to carry out simple tasks. The impact on the whole body can lead to fatigue, sleep disturbances, and an overall diminished quality of life.

What impact does dismissing psoriatic arthritis have?

PsA patients should not be denied the right to mourn their lives before the diagnosis. Our emotions are valid, and the emotional impact of PsA should not be underestimated. It is challenging to face a lifetime of chronic pain and disability, and the emotional toll should be acknowledged and supported.

When people dismiss the seriousness of PsA, it can lead to feelings of unworthiness. The constant need to prove the severity of one's condition creates a harmful cycle. PsA patients are left feeling as though they must push themselves to extremes, causing further pain and fatigue. This emotional struggle is a significant part of living with PsA.

Why are comparisons unhelpful?

Comparing PsA to other conditions, such as rheumatoid arthritis or multiple sclerosis (MS), is not a productive exercise. Every disease has its unique set of challenges, and they cannot be compared. While it's natural to be grateful for not having another condition, it doesn't diminish the impact of PsA. PsA patients deserve to have their experiences recognized without reference to other illnesses.

What does the psoriatic arthritis community need?

The frustration and awareness raised in this article point to a larger issue: the need for greater understanding and support for PsA patients. It's vital to challenge misconceptions, educate the public, and encourage empathy and validation for those living with PsA.

Unlike the commercials that depict PsA patients skydiving and pursuing extreme activities, our real goals are more humble. We want to be able to carry out daily activities without triggering a flare. Washing dishes, hugging our children, or cleaning our homes without experiencing severe pain should not be an elusive dream. The focus should be on improving our daily lives and managing the condition effectively.

In conclusion, PsA patients have every right to feel the full range of emotions that come with a chronic condition. PsA is not a minor inconvenience; it is a full-body disease with far-reaching consequences. By challenging misconceptions and encouraging empathy, we can create a world that better understands and supports PsA patients in their journey toward better health and quality of life.