Explaining psoriatic arthritis to someone who has never experienced it is like trying to describe a color they’ve never seen. For over 35 years, I’ve tried to make people understand this autoimmune disease, but it often feels like an uphill battle.
Psoriatic arthritis occurs when the immune system mistakenly attacks healthy joints and skin, causing inflammation, pain, stiffness, swelling, and flaking. It’s not just a physical challenge but an emotional one, too. My journey with psoriatic arthritis has been long and grueling, filled with lessons, doubts, and countless battles—not only against the disease but also against societal ignorance.
The Long Road to Diagnosis
It took years to receive a proper diagnosis, even though my symptoms started over three decades ago. By the time I finally knew what was wrong, the damage was done, and the pain had become a constant companion.
- My most recent doctor’s appointment revealed that I might be losing functionality in some joints.
- At that point, I had over 25 pain points across my body.
Imagine trying to describe pain that feels like it’s everywhere, yet being asked to “point to the exact spot.” This was my reality.
A Battle Against Misunderstanding
One of the hardest parts of living with chronic pain is the lack of understanding from others.
- Medical Community: While progress has been made, even pain specialists often don’t fully grasp the depth of chronic pain. Despite being on some of the best medications available, I still have to explain that these “good drugs” don’t always work.
- Family and Friends: Comments like “You don’t look sick” or “Are you still in bed?” make me question myself. For a moment, I wonder, “Am I really in that much pain?” But deep down, I know better.
A Story From the Past
I once spoke to a family member in her 90s about this. She laughed and said, “At least someone listens to you now.” Back in her day, any illness or pain in women was dismissed as “going through the change.”
Living With the Medications
I’ve been on biologics for 16 years, along with numerous other medications. While they provide relief, the long-term effects are unknown. It’s a terrifying thought, but the alternative—living in relentless pain—is even scarier.
- Pain doesn’t just affect the body; it also takes a toll on the mind. Crying yourself to sleep and spending entire days in bed isn’t laziness—it’s survival.
The Invisible Burden of Pain
Pain is a constant shadow. Even when you can’t see it, it’s there. This invisible burden often leads to doubt—not just from others, but from within yourself.
- Yes, I can do certain things. But should I? And at what cost?
- What most people don’t understand is that while I might look fine on the outside, I’m often enduring excruciating pain on the inside.
The Fight Continues
If there’s one thing I’ve learned, it’s that we must fight—for ourselves, for each other, and for a better future.
- We need to stand together to advocate for better healthcare, more understanding from doctors, and fairer treatment by insurance companies.
- Let’s go to Capitol Hill and demand that our voices be heard.
Pain Is Real
Pain isn’t just a symptom of psoriatic arthritis—it’s a constant reality. While we can’t eliminate it completely, we can fight for the quality of life we deserve
What Does the Future Hold?
The fight for awareness and understanding continues, but one thing is certain: we are stronger together. If you’re living with psoriatic arthritis or any chronic illness, know that your voice matters. Let’s work together to ensure that pain is recognized and respected—not ignored or dismissed.