What does the airline I fly with or a 40th birthday celebration have to do with psoriasis? A lot, it turns out. Chances are you know someone with psoriasis, or another skin condition, but you may not realize it. Like me, they might be that person that always wears pants or long sleeves, even when it’s warm outside. Psoriasis affects about 2% of the population, including the well-known Kim Kardashian.
But whether you realize that someone in your life has this chronic skin condition or not, you probably don’t know what it’s actually like for them on a daily basis.
I’ve had severe psoriasis since I was 4 years old and it is a huge part of my life. Until recently, I was so ashamed of it that I never talked about it and even tried to cover up around my husband. But thankfully, one of the benefits of growing older is that I am feeling more and more comfortable in my own skin, spots and all.
I’m currently writing a book called The Joy Plan about how I went from a very low place in my life to a sustained state of ridiculous happiness. I’m basically writing it for myself so I can remember how I did it. Part of my journey to joy was making peace with my psoriasis.
I can now see that having psoriasis (or any ailment, for that matter) gives me the opportunity to have a profound daily practice. That practice is to be kind to myself when I look in the mirror, to be patient with myself when psoriasis takes up more time in my life than I’d like it to, and to find my joy even when I’m physically uncomfortable.
I’m turning 40 this year, along with the other women in my women’s circle, and the group decided to celebrate our 40th birthdays with a week-long river rafting trip in the Grand Canyon. Great for them – torture for me. My skin is a delicate ecosystem highly affected by humidity levels. A week in a dry place like Arizona in July can cause a major psoriasis flare-up that could take months to recover from. I’m sorry ladies, but I won’t be joining you.
I recently went on a 2-day business trip that required a flight. Most people could pack only a carry-on bag for such a short trip, but because of the number of lotions, potions, sprays, creams and ointments I use daily to keep my psoriasis under control, I could never make it through airport security. So I had to let my client who was booking my flight know that I’d be checking a bag – in case they wanted to choose an airline that doesn’t charge for checked luggage.
These are just a couple of examples of unexpected ways that psoriasis affects my life. I’m sure this must be the case for anyone living with a chronic condition.
Here are some other things that may be surprising to you about psoriasis:
- Psoriasis is an autoimmune disease with a genetic component – and quite often a life event activates the gene. In psoriasis, the immune system is overactive and produces inflammation and new skin cells up to five times more rapidly than normal.
- There are seven different types of psoriasis, ranging from mild (a few spots) to severe (nearly total body coverage).
- Psoriasis is not contagious, although it can be mistaken for contagious skin conditions such as chicken pox.
- Psoriasis can be expensive: from prescription medications, to herbal supplements, to palliative creams, the psoriasis bill can easily be in the thousands per year.
- Psoriasis can be time-consuming – from twice daily applications of medications, to regular exfoliation, to preparing herbal concoctions or following a complicated diet, psoriasis can take up an incredible amount of time.
- Most people with psoriasis are undergoing some form of treatment for it – from systemic pharmaceuticals to diet modifications, and those treatments may have side effects that you don’t understand. For example, UV light is a common treatment for psoriasis and leaves patients with a tan.
- Your friends with psoriasis may be extra picky about their diet for good reason. For some people, certain foods or drinks cause a nasty flare-up.
- People with psoriasis may have to be extra careful not to get injured. Approximately 10 percent of people with psoriasis (including me) have the Koebner phenomenon – where new psoriasis lesions appear wherever skin is broken – in even the slightest injury.
- Psoriasis can be painful – from itchy, to dryness that cracks and bleeds, to a stinging sensation. Your friends with psoriasis may be physically uncomfortable a lot of the time.
- Psoriasis can come in flare ups that last from days to years and then go into remission for varying times. During flare ups, it is a very present experience in daily life, and during remission it’s often a major focus to keep up medications, diet and lifestyle to keep it that way.
Having lived with severe psoriasis for 35 years, I can say that understanding these things would help my loved ones understand a huge part of my life. Mostly, I think people with psoriasis and other chronic skin conditions would like their loved ones to understand what we are dealing with but not define us by our condition. It is music to my ears when my husband says, “I don’t see your spots – I just see you, and you are beautiful to me.”