I am a 57-year-old woman who has been living with psoriasis and psoriatic arthritis since the age of five. I got my first job at age 14, and have been going strong ever since.
When I started my very first summer job working at a school for kids with disabilities, I knew my psoriasis was going to be a problem. Indeed, people were staring and pointing within a matter of minutes. I had psoriasis on my face and arms that was visible for all to see. As a child I was used to kids pointing and making fun of me, but I thought the adult working world would be totally different. Boy, was I wrong!!
When I first started working, I didn’t know how to cover up or hide my condition for a job. As the years went by, I would learn how to take extra care of what clothing I wore or how I wore my hair so people wouldn’t focus on my psoriasis. This wasn’t easy. I found out quickly that choosing the right clothing and styles when you have psoriasis and flare ups can be a challenge for work or any time. I had to wear loose clothing that didn’t rub against my skin and cause pain and irritation. Fabrics made of cotton were more comfortable than synthetics.
I also realized early on that I couldn’t wear necklaces, bracelets, watches or waistbands. Pantyhose was my best friend growing up for hiding my psoriasis, and thankfully I worked in offices where it was mandatory to wear them. However, there was days that I had to wear three or four pair at a time to hide my psoriasis, making my skin itch like crazy. I remember being in meetings and not wanting to fidget or scratch because I knew flakes would be everywhere. My worst fear at any job was that I would leave flakes wherever I went with people saying, “Diane’s been here again, she left her skin behind.” I have lost count of times that I have been on my hands and knees in bathrooms, near other peoples’ desks and hallways to clean up flakes.
It was so hard for people to understand that psoriasis was not just a rash. Sometimes, smells such as perfumes would cause my skin to be irritated, but in the work place, you can’t tell someone not to spray perfume or can you do that in the bathroom? I didn’t want to come across as someone who was a complainer or wanted special treatment. As the years went by and I got to understand my condition better and educate myself more I was able to tell my employer how serious my condition was.
Then in addition to dealing with psoriasis in the workplace, I started having signs of psoriatic arthritis at the age of 25. I had to seek the help of my doctor because I hurt so badly. There were days I couldn’t walk without severe pain. However, because I always looked great and had a smile on my face and appeared normal, people didn’t take the severity of my pain seriously.
One of my jobs wanted me to travel and it was hard for them to understand that the soreness and stiffness of my joints affected my ability to move and travel. It was so hard 30 years ago to be young, ambitious and intelligent when arthritis was considered an old person’s disease with very little understanding of the impact it had on your ability to function.
I began working in the banking industry almost 30 years ago. It was a demanding job with long hours and an extremely stressful environment. However, I never let my psoriasis or psoriatic arthritis stop me from doing my job well, but it could make working incredibly difficult. I always had questions in the back of my mind. What if I can’t work in the corporate world? What would I do with my life? What if I have to go on disability? I remember being on a medication that the only thing I wanted to do was sleep. I was just exhausted all the time. The minute I got home I would fall asleep and sleep all weekend; just to have enough strength to get through the following week.
When I was 40 years old, a doctor who didn’t think I should be working wanted to put me on full disability. But I didn’t take that opportunity because I knew I had so much more to offer. I am so glad that I didn’t jump at it.
The one thing I have learned after all these years is to talk to your colleagues about your medical conditions from the start so people don’t have to guess what is going on with you. If you have psoriasis, let them know you’re not contagious and be honest about how it impacts your life. Educate them about your condition; they will respect you more. Become an expert by learning all about your condition and the right way to describe it, and you will feel more informed and confident when explaining it to others.
So yes, I did wear clothing that would cover my psoriasis. If you wish to do this, it’s ok. I no longer want to cover up but it’s all comes down to how you feel—there’s no right or wrong.
Over the years I have been an active advocate for psoriasis and psoriatic arthritis, speaking up and out about this disease. I am now Executive Director of the nonprofit Psoriasis Network Support: www.psoriasisnetwork.org.