What I Wish I Knew When I Was First Diagnosed With Psoriasis
By the time I was diagnosed with psoriasis in my late 20s, my son–who was diagnosed with psoriasis and psoriatic arthritis at age 5–was already on his second biologic treatment. For three years, I’d been solely focused on his health, navigating doctors, insurance, medication, and every other aspect of these diseases. I thought I was becoming an expert in weaving through the health care maze, but I was in for a big surprise when I had to start managing my own psoriasis diagnosis.
It’s always easy to be critical of the younger, less-experienced version of yourself. Knowledge from life experiences is truly essential. Looking back on the past 15 years, life with psoriasis has taught me to prioritize my time, ask questions, and strive to have patience–all things I wish I knew from day one.
Here’s what my older self would tell my younger self during the early days of my psoriasis diagnosis.
It seems like you don’t have time for one more thing to be added to your very full plate. But you do.
You just have to prioritize the hours in the day. And, yes, managing your psoriasis does suck hours out of the day. But aren’t you worth it?
Put managing your health on the top of your to-do list–every single day. It might take you a few hours each morning or a few hours each week. Either way, you have to make time to schedule doctor appointments, refill medications, take your medication, follow-up with the insurance company, and take at least five minutes to just breathe and focus on your mental health. If you procrastinate on these tasks, your disease will worsen, and getting back on track will be twice as hard and twice as exhausting.
Remember that phrase, “there are no dumb questions”? The same is true for psoriasis. If you don’t know, ask. If you’re confused, ask. If you’re curious, ask. And if you don’t get a satisfactory answer, then ask again. If this were about your child’s health, you would do it. If it were your husband’s health, you’d do it. You are just as important, and your family is better off when you’re taking care of yourself.
The trick is making sure you ask the questions to the right people, like your dermatologist, your insurance company, the nurse on-call for the drug manufacturer, or the National Psoriasis Foundation’s Patient Navigation Center. Your neighbor with a relative who once cleared his psoriasis by drinking some crazy tea? Nope. Not her. Definitely not her.
You don’t have a fairy godmother to wave her wand and magically make your psoriasis disappear. Managing your psoriasis will take time. But although it might take a while to see results in clearing your psoriasis, it doesn’t mean it will never happen. Be patient. You’re in it for the long haul.
Understand you could be on hold for an hour with the insurance company. It might take three months to get in to see your doctor. The first five medications may not work, but the sixth one is the next best thing to a miracle, and remission is right around the corner. And if you come out of remission and start to have symptoms, don’t give up. Hang in there and start again.
When all else fails, love the person inside your skin. Know you are doing the best you can in the moment and you’ll never be perfect. Have the strength to endure and accept that you are worth the struggle and time needed to put your health at the forefront. Simply put, you are important, so treat yourself like a VIP.
Had I known this advice 15 years ago, I may have been a little more on top of managing my psoriasis. I would have prioritized myself and my health. I might have even given myself a few more breaks along the way for my missteps that set my psoriasis flaring. After all, if we don’t learn from our mistakes, then we just keep making them. Everything is a learning experience, and if my younger self could see how far I’ve come, I know she would be proud.