I have suffered with psoriasis from a very young age, but it wasn’t until I faced a significant work crisis at age 56 that I experienced a sudden and all-encompassing flare of psoriasis and started feeling pain in my hands, feet and joints.
I was working for a global company when a major project came up – marketing, placement and service for major hospitals and hospital systems and long-term care facilities. Only senior leadership could handle it. Work turned into 14-hour days that included traveling on Sundays and returning home on Fridays for 13 consecutive weeks.
The stress was unbearable. I suddenly found myself covered with scaling from my scalp to my toes. I was unable to move without significant pain. I had no time to seek medical help during the assignment, so it was much later that I was officially diagnosed with psoriasis and psoriatic arthritis.
I was meeting with and presenting to CEOs, CFOs and company presidents for clients all over the country. I found that as the days and weeks progressed, I was being pushed out of face-to-face meetings with clients with whom I had done business for years. I was being asked to step into the background while business associates made comments about my lesions and drew farther away.
NPF Videos: The emotional side of psoriatic disease
Then the real issues began
After my diagnosis, I had to go through step therapy before finding a medication that would help control the disease. My manager did not understand my having to make three visits a week to the local hospital for my treatments. She started bullying me. She criticized me in front of my associates. This only exacerbated the stress that was contributing to my flares. The co-pays were $120 a week. The bullying was unbearable and the cost was unaffordable.
I tried and failed taking four biologics and participated in two clinical trials over several years. Because of the repeat doctor visits, I had to work 12- to 15-hour days to keep up with my increased responsibilities. It was exhausting, and the bullying got worse.
Getting around when getting around hurts
As my work responsibilities increased, management’s intolerance increased as well. This is when my PsA started to become debilitating. My joints and my feet hurt more every day. I reached a point where I could not put any weight on my feet first thing in the morning. I needed to walk around in pain for 15 to 20 minutes before I could even start getting ready for work. I didn’t dare take any additional time away from the office to seek medical attention for the pain.
Finally, I went to my manager to have an open dialogue about what was happening. I discussed the emotional impact that her actions were having, which were causing me to seek outside counselling. The bullying stopped.
I consider everything a learning experience. My professional achievements were due solely to keeping my head down, doing my best work and ignoring the corporate issues. I loved my job despite the challenges. Did my psoriatic disease impact me physically and emotionally? Yes. Was any of this easy? No. Was it worth it? Absolutely.
Tips for coping with psoriatic disease
We know that living with psoriatic disease can be painful and difficult to talk about. Whether you feel overwhelmed or isolated, need help talking to family about your disease, or would like to get connected with others in your area — the National Psoriasis Foundation can help. Get a free fact sheet on coping with psoriatic disease.
By Ellen Clements for NPF