Helping People Trying to Help You
Most everyone acquainted with me knows that I have psoriasis. If they don't know yet, they will know soon enough. Psoriasis is a part of me that I share when I speak to groups, new acquaintances, and on social media. I put my experience with psoriasis front and center when I have an opportunity to bring greater awareness, share lessons that I've learned, get support, or help those impacted by chronic illness.
One clear drawback to sharing my story so openly, is that I also receive unsolicited recommendations, misguided information, and suggestions on how to treat my psoriasis. The other day I gave a talk at church. As part of my introduction I mentioned a psoriasis treatment that I’m trying out. Afterwards, an attendee hurriedly made her way towards me intent on giving me a message. I figured she loved my talk and wanted to hear more. Not the case at all. She wanted to tell me that her friend has the same thing I have, and what worked for her friend should cure me.
It's no wonder that one of my long-standing pet peeves are people who approach me with, “Have you tried ... for your psoriasis?” or “Don't you know that your condition is caused by ...?” I have my purposes in talking about psoriasis, however, soliciting medical advice is typically not one of them. I truly doubt those people know my health condition well enough to treat me.
Over time, I came to recognize something at work in those conversations. Some didn't think first before speaking. They minimized the impact of my condition and gave me a quick fix. Nevertheless, others truly cared enough to share their thoughts with me. They wanted to help me, but didn't know how to help. However misguided (and sometimes irritating) their suggestions, I could see they meant well.
I slowly built up a list of ways I could respond to those people who wanted to help me, but didn't know how. Instead of becoming upset, I committed to responding in a way that could help those who wanted to help me. If they truly want to help me, I felt they would listen and learn the best way to approach me about my psoriasis. If they don’t have that pure motive, then they will leave me alone in the future.
The following ways to help those trying to help me work like a ladder. If people respond well to the first step in the ladder, I move on to the next. Few climb to the third rung, but those who do become my greatest personal support in living with psoriasis.
Some will experience remission of various lengths. I've heard of people “cured” of psoriasis. But there's the chance that it will return after a respite away, even if it's a long vacation. With no cure, and treatments often losing effectiveness over time, those afflicted with psoriatic disease must eventually face reality. Psoriasis could be here to stay.
One person stood out to me at a psoriasis related event a couple years ago. A group of us began discussing how to respond to others who notice the psoriasis on our skin. This older man jumped into the conversations to share his strategy. To my surprise, he grew more and more animated as he talked about how he irately cusses them out. I could relate to being upset with others, but personally felt that his approach might only produce more anger and stress in the long run.
Instead, I learned to be gracious. When the woman at church talked to me, I simply thanked her for showing her concern. If someone asks me if I've tried this or that, I share my experience with them. If I haven't tried what they suggest, I say I'll do some reading or research into it. Reacting politely keeps me calm, avoiding unnecessary stress. It also provides an opportunity for me to test that person's willingness to learn more about psoriasis and my condition.
Educate and Clarify
I gauge whether or not others truly desire to help me by offering my unique perspective to them in an effort to educate and then observing how they react to those insights. The woman at church responded the way many people do when I began to clarify how those with psoriasis respond to different treatments. She seemed uninterested and tuned out. I let her go at that point.
Others, however, want to understand more about psoriasis. I work in a college town with students who are eager to learn. One student I met at a group meeting asked to interview me about living with psoriasis. She needed to write a paper for her health class and thought my story would fit her paper topic. The next day we talked for almost an hour. She didn’t know much about psoriasis until she talked to me.
Other opportunities to educate others about psoriasis come from time to time. Someone staring at my skin at the mall might not take the time to learn more about psoriasis. But certain friends do ask about how my skin is doing. It's those latter people who could become part of my support network. They show interest and take initiative to join me on my psoriasis journey.
Welcome Further Support
As a college student, I resented driving to the dermatology clinic thirty-five minutes away for phototherapy treatments. A recent graduate, who volunteered with an on-campus group I joined, befriended me in my second year. One day he asked if he could drive me to the clinic once a week on his day off from work. I couldn’t believe that someone would care that much to help me.
Over the years, he's been an incredible friend and support for me not only with psoriasis, but in life. I naturally only have a handful of friends like him. Those I do have I cherish knowing I can count on them to check in with me from time to time. They take the time to listen as I try new treatments and expand my efforts in advocating for others with psoriasis.
It doesn't sound logical, but times will come when those of us with psoriasis need to help others learn how to help and support us. Although living with psoriasis is hard enough, with some effort and a renewed attitude, those who try to help you just might become your greatest supporters.
Any suggestions made are not intended to replace the advice of a qualified medical professional. Please consult your healthcare provider prior to making any changes to your treatment, exercise or diet routine.