Speak Clearly: Perspectives on psoriasis

To My Teenage Self,

You’ve never known a day without psoriasis since you were five years old when this disease decided to flare up and cover your skin. All these years later, I can tell you it’s been a long journey. At times it felt like a curse: you grew up accepting that people could be cruel when they made negative comments about your skin. You remembered being pulled out of a swimming pool after someone accused you of being contagious. Complete strangers often made you so very aware of the fact that you were ‘different.’

Then you hit your teens, and the curse got worse. Your hormones raged. Everything about your body felt awkward, especially your skin—which flared, flaked and shed, rebelling against treatments that had worked before. Your parents always told you that psoriasis was a gift. It would make you strong. It would help you understand the world in ways that others wouldn’t. You didn’t believe them, of course, but you tried your best to show the people around you that being different didn’t have to be a bad thing.

During your teenage years, psoriasis would cause more heartbreak than boys. You would spend so many evenings shedding tears trying on outfit after outfit. You were desperate to find the one that magically made your psoriasis disappear—only to realize that no outfit like that existed. And psoriasis affected more than just your skin. All those years of dealing with psoriasis negatively impacted your self-image, your willingness to open up to others and your mental health. Years of living with these burdens, both physical and emotional, can become difficult to bear, especially when it does not feel like anyone can help.

Of course, it’s so easy to talk in hindsight, having now grown up and grown into our skin. I can say it’s been a rollercoaster—and there are definitely still bad days—but the experience has taught me a few key lessons. I can’t give everything away (that’s the thing about experience), but here are some things I’ve come to learn that wish I would have known when I was your age:

• A problem shared is a problem halved. Most of the time you feel completely alone with your psoriasis. Just know, finding the ever-growing online psoriasis community and sharing your journey has allowed your confidence with and understanding of psoriasis to grow. You’ve met so many people who can relate to you—some of whom are now your best friends—and it has given you the courage needed to help others who feel like you do now.
• This too shall pass. I know you find it nearly impossible to fight off negative thoughts around psoriasis, which can have a detrimental impact on your self-confidence. For a long time, you’ve genuinely believed that you were going to spend the rest of your life feeling like you didn’t fit in or aren’t ‘normal.’ But you should know it is a phase, and though it’s painful, you will survive. Always remember, everything passes, and it's important you stay strong and not give up. Be positive, speak up, don't settle for mediocre, especially when it comes to managing your psoriasis, and remember—nothing is permanent.
• Everybody is fighting a battle. You will meet many people in life, and they’ll all have their own insecurities that you don’t even notice. Most are focused on other amazing aspects of you and your personality, that they don’t notice the psoriasis you are so insecure about. Everyone is battling something, so be kind, accepting and easy on them and yourself.
• Proceed with caution on the internet. It will only be a matter of time before you start spending an unhealthy amount of time researching ways to cure your psoriasis online, unearthing some weird and downright scary ‘solutions’. You’ll try many different ‘cures,’ all without success. It took a long time and a lot of searching—Google-searching and soul-searching—to realize that there is a lot of misinformation out there, all aimed at taking advantage of people desperate for answers. Please stick to trustworthy sources of information, such as your doctor or reputable educational websites, like Let Me Be Clear, for advice, and you always check your facts before you believe a false promise.

If I wish anything for you, I wish you could have known how strong and brave you will become, so that it didn’t hold you back so much in your teenage years. I wish you could have found this confidence sooner so you didn’t have to live with the burden for so long. However, you will grow up and, alongside a whole community of psoriasis warriors, will help change the lives of so many people. You will encourage many other teenagers, like yourself, who are heading into the storm. You’ll reassure them that there’s a whole world of people who understand your struggles and see your potential. So…our parents are right: our psoriasis is a gift and we have found a way to use it to give hope to so many people in this world.

Sincerely,

Present-Day Lianne

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