At the age of 26, after having my son, I had a few little spots of psoriasis – a small patch on my left elbow and some irritation at my hairline on the back of my neck. It was nothing too serious; I just needed a topical, and I was good. But from 2009 to 2013, my psoriasis worsened with each flare to the point where my arms and legs were covered, and I needed to take methotrexate.
In a matter of years, I went from being a full-time model to a polka-dotted spectacle…or so I thought. I would get so upset simply from the looks I was getting – and not the good ones I was accustomed to – but looks of confusion and disgust. Those who dared vocalize my flares? Well, bless their hearts. Couldn’t these people see I was already having a bad day? Why would they ask if I am contagious, or my personal favorite, if I have AIDS?
My last severe flare, in 2015, took me on a journey I never thought possible. Sadly, neither did any of my doctors. I started with guttate psoriasis. Then I joined the 30 percent of people with psoriasis who are likely to also have psoriatic arthritis (PsA). In December 2015, strep throat attacked my body, and this triggered a flare that covered almost my entire body. I could have been an extra in a zombie movie sans the special effects.
Imagine my surprise when I went to my otolaryngologist – better known as your ear, nose and throat (ENT) doctor – to see about getting my tonsils removed. That was when I discovered I had lost 45 percent of my mid-range hearing in both ears.
None of my doctors – not my internist, not my ENT, not my dermatologist, not even my rheumatoid specialist – knew that PsA could cause hearing loss. It is rare, but it is possible. I am not great at math, but I am pretty sure the odds of me getting hit by a bus are greater than the odds of having PsA and tinnitus. So in a nutshell, I went from modeling to wearing hearing aids and carrying an arsenal of meds and sanitizer everywhere I go.
I was infuriated! But all that did was make it worse. I found comfort in researching and finding the source behind my daily migraines, my constant fever and aching lower back. But as a single mother with an MBA, research is no stranger to me.
Now I know that my struggle is my purpose. I went from hating having to explain my illness to people to finally realizing that I was actually educating them. I want to share my journey with other people who are just like me. I’m talking about those who are tired of being tired; those who want to scream every single time someone asks them to rate their pain from one to 10. Are you kidding? Sometimes I am not sure I know what pain is anymore.
But I do know this: my spots are a constellation of me fighting a daily struggle. They are my battle scars. I kept pushing, and you should too. My hearing loss motivated me to put more effort into music. I went from an average DJ to having nine consecutive mixes that topped the charts on one of the largest musical websites. I am better than ever at yoga, and for my last birthday, I got a bicycle so I can go riding with my son.
No matter what, I will continue to educate myself and others, and hopefully inspire a few people to do the same. So I will leave you with this: Trust your struggle, educate others and own it!
(Editor's note: See you on Monday, May 1, for Psoriatic Arthritis Action Week!)
The opinions expressed by NPF Blog contributors are their own and do not reflect the opinions or positions of the National Psoriasis Foundation. The information posted on the NPF Blog is not intended as, and is not, a substitute for professional medical advice.
Driving Discovery, Creating Community
This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.