know pso Archives - Listen to Lena

What makes someone an “expert”? Is it education, training, experience – a combination of the three? Or is it simply living, day in and day out, with something that forces you to learn, adapt and overcome?

If having psoriasis (PsO) for over 30 years – 75% of my life – makes me an expert, I’ll say I’ve earned my accolades. When I first started showing symptoms of the disease, I didn’t want to leave my room. I can recall every nuance of my childhood bedroom, and the hours I spent looking in the mirror while scrutinizing my imperfections. Running my fingers over the scales. Picking at the scabs. Wanting to pull the covers over my head and hibernate.

Today, in remission and thriving, the only time I hide away in my room is when I’m wearing cute pyjamas.

However, there were many, many lessons learned along the way. And if there’s one thing we’ve learned from experts on social media, it’s what NOT to do. Here are five things I’d never do as someone who has psoriasis:…

When I was just 11 years old, I asked my mom to look at my scalp. “It feels strange,” I worried. It was mildly itchy and had a tingly, almost burning sensation. Additionally, I had felt quite a few bumpy patches that I couldn’t keep my hands off. “Have you been picking?” she asked, knowing that I tended to scrape and pick at scabs. “Yes,” I admitted. “It’s very itchy!”

(That was only partially true. Have you ever seen the payoff from psoriasis scabs? They’re like the size of cornflakes and I found them so satisfying to peel! Disclaimer: Don’t do this!)

My mom marched me to our family doctor who a) diagnosed me with psoriasis and b) suggested a coal tar shampoo of which I can still recall the smell to this day. Faithfully, once a week, I tipped my head over in the bathtub while my mom massaged the shampoo into my hair and scalp. When I was older, I took over the duties myself, and weaned myself off the regimen when my psoriasis improved – though it never completely went away.

While I tried not to let my psoriasis get me down, it nevertheless affected me psychologically throughout my teens and twenties. I rarely wore my hair up, concerned that the scales and scabs would be more visible if I pulled my locks away from my scalp. I panicked when my hairdresser went on vacation, knowing I’d be too embarrassed to have a new stylist do my hair. When I dated, I freely disclosed my condition out of fear that a man would nonchalantly run his fingers through my hair – and draw back in surprise.

It’s obvious that while I thought I was “managing” my psoriasis, I was still allowing it to control my day-to-day. Fast forward to 2014, when, after decades of letting my psoriasis symptoms wax and wane, my joints flared to the point where I was disabled with swelling and pain for over six months. The diagnosis: psoriatic arthritis (PsA).

Today, I have mild flares of psoriasis on my scalp, lips and elbows, but I’m considered to be in clinical remission thanks to the medications I take for my psoriatic arthritis (which have the added benefit of keeping my psoriasis in check). I regularly see both a dermatologist and rheumatologist for my conditions, making sure to advocate for myself when I need to. Recently, I had a chance to sit down with Dr. Geeta Yadav, a dermatologist based in Toronto at Skin Science Dermatology.

In the days leading up to the interview, an idea started to form – I wanted to share with you some things I wish I knew about psoriasis decades ago (that I know now). Dr. Yadav was knowledgeable and thoroughly answered my questions, which in turn allowed me to create the following list for you!
1. Psoriasis is a lifelong condition.

If I had clearly understood that my psoriasis would likely be with me for the rest of my life, I would have taken more definitive steps sooner to get my condition under control (and certainly before it progressed to PsA). …

Five Things I’d Never Do as Someone Who Has Psoriasis

If I Knew Then What I Know Now… Living with Psoriasis