I’m still in denial about this…About a year ago, my rheumatologist changed my diagnosis from Ankylosing Spondylitis (AS) to Psoriatic Arthritis (PsA). This was due to unexplained rashes and dactylitis in addition to my symptoms of joint pain, joint swelling, muscle pain, and fatigue. Dactylitis is also known as “sausage toe.” Doesn’t that sound attractive?
My Identity
With this change in diagnosis, I feel like I’ve lost my identity. I used to be “AS” and now I’m “PsA.” To me, it’s like saying my name is no longer Theresa; now it’s Trixie. But wait a minute! I liked Theresa!
Psoriatic Arthritis is an inflammatory arthritis that can develop along with skin psoriasis. Psoriasis is a rash of red patches on the skin with white, flaky scales. Most patients develop psoriasis first, then are later diagnosed with Psoriatic Arthritis. However, this wasn’t the case with me. I was diagnosed with Ankylosing Spondylitis in February 2012. I remember about a year later, I had two red patches on the front of my legs, above the ankles. This rash also had an area of white, flake scales. I didn’t put the connection together. About a year after that, I had an unexplained rash on both of my legs but didn’t have the white patches. My rheumatologist sent me to a dermatologist for treatment. The doctor gave me a prescription that eventually cleared up the rash.
A Family of Diseases
Ankylosing spondylitis and Psoriatic Arthritis belong to a family of inflammatory diseases called Spondyloarthritis (SpA). SpA diseases include:
Axial Spondylitis: where the main symptom is back pain.
Peripheral Spondyloarthritis: inflammation in the joints and tendons outside of the spine.
Reactive Arthritis: joint pain and swelling triggered by an infection in another part of your body.
Enteropathic arthritis/spondylitis: an inflammatory arthritis associated with inflammatory bowel disease (IBD), notably ulcerative colitis and Crohn’s disease.
Embrace my inner “Trixie”
I will say goodbye to Ankylosing Spondylitis and say hello to Psoriatic Arthritis. It’s all essentially the same disease, just with a variation of symptoms. Spondyloarthritis is the over-arching term for a family of associated diseases. Therefore, I still fit under the umbrella of spondyloarthritis.
This change in diagnosis makes me reflect on the fact that my disease is my identity. Is this a good thing or a bad thing? It’s good because it is a platform for me to advocate for arthritis. Speaking out about this disease, advocating for legislative change, and writing a blog have been my proactive approach in learning how to manage and accept this disease. I can’t help but wonder do I solely identify with a chronic illness? Am I letting this take control of me instead of controlling it?
Here’s the reality. Yes, I am controlled by this disease because each day I am faced with pain. This disease is front and center in my life. The tricky nature of inflammatory disease is some days you feel better than others. It’s difficult to plan your life because you never know how you will feel each day. This disease has also forced me to obtain disability benefits because I able to work only a few hours a week. So, sadly, the answer is yes.
While that may sound depressing, I know in my heart I have a
lot to be thankful for. I have a
wonderful family that supports and encourages me. I work a few hours a week at a community
college working with first generation students, which is a highly rewarding
experience. I enjoy staying physically
active and I’m interested in health and wellness. I am grateful for all these things and so
much more. While PsA is a defining part
of my life, it’s not my whole life.
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