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:
1. Settle for lacklustre treatment from my family doctor.
Family doctors are likely the first person we’ll look to when something goes wrong – including the onset of psoriasis and its myriad of symptoms. And for many individuals, a treatment plan devised by their family physician is not only adequate; it completely addresses their needs.
However, if you feel that your psoriasis symptoms are not appropriately relieved (or getting worse!), insist on a referral to a dermatologist. They’re the specialists when it comes to treating psoriasis, and the customized treatment plans they offer – both topical and systemic – can effectively put the disease in remission.
2. Ignore food, environmental and lifestyle triggers.
Sure, everyone is different. However, with 1 million Canadians battling psoriasis, there are sure to be similarities across all patients, or “triggers”. Don’t ignore them.
Common triggers include stress, infection, (sometimes) pregnancy, a response to certain medications, and environmental, such as cold, dry weather. These triggers are generally out of our control, but there are also several that are in our control, including smoking, obesity and swimming in chlorinated water.
When I first consulted with a dermatologist over my psoriasis, she advised me to keep a food/ activity journal to help identify my potential triggers. Stress and freezing Canadian winter temps took top honours! Understanding my triggers helped me manage my condition; I try to keep stress at a minimum and stay on top of moisturization and hydration during the winter months.
3. Be closed off to the idea of exploring systemic therapies.
I have both psoriasis and psoriatic arthritis (see point #4 below). In 2014, it was suggested that I add a “biologic” to my treatment regimen (a special type of powerful drug that slows or stops damaging inflammation). But, I resisted. I was uninformed, misinformed, and scared.
Eventually, I did explore system therapies, and today, I’m so glad I trusted my dermatologist and rheumatologist. Listen, I can’t speak to specific medications or decide if you’re a candidate for remission, but I can say that it was the right choice for me.
4. Ignore the warning signs of psoriatic arthritis.
The fact is, 1 out of 3 people who have psoriasis will go on to develop psoriatic arthritis. Some of the warning signs are:
– a history of psoriasis
– swollen and stiff joints, especially the fingers and toes
– back and shoulder pain
– unexplained fatigue
Not everyone with psoriasis develops psoriatic arthritis, but realistically, 1 in 3 odds aren’t exactly reassuring. As someone who manages both conditions, I know that treating psoriatic arthritis early can help avoid further joint damage. So, if you have any new or unusual symptoms, be sure to discuss them with your doctor or dermatologist.
5. Feel alone or isolated from others based on your condition.
When I was diagnosed back in the late 80’s, of course the internet wasn’t a thing. Short of a close personal contact also having your disease, there was no way connect with others who could relate, show empathy and offer support.
Today, we can reach out to anyone, anywhere. Message boards, blogs, patient websites and Facebook groups are a great way to meet other PsO warriors. Belonging to a community where you can swap stories, read about advances in treatment and sometimes, just vent about your condition, goes a long way to keep your mental health in check. I’m thankful for the psoriasis resources that are readily available to Canadians. Trust me – you’re not alone.
Is my list complete? If you have psoriasis, what’s one thing you’d never do?