Does Your Family Understand Your Psoriasis?
On World Psoriasis Day, October 29, the Happiness Research Institute and LEO Pharma Innovation Labs revealed the results of survey data gathered through their PsoHappy app. Their research report noted that “those living with psoriasis are between 12% to 24% less happy than the average person.” I could definitely relate to how the annoyance, frustration, itchiness, and irritation of psoriasis has lowered my quality of life and sense of happiness.
One statistic I heard at a presentation of the data in New York City at a World Psoriasis Day reception was that “only 27% feel their closest family understands what it is like for them to deal with psoriasis.” That statistic stood out to me the most as I thought about those who felt alone with psoriasis even in their own homes.
My Family Growing Up
It’s surprising when you realize the person you are feeling compassion for is actually you. In the home where I grew up, I did not feel understood as a child and teenager with psoriasis.
It’s not that my parents didn’t care, because they made great efforts to make sure I had the treatments and medical care I needed. I have fond memories of how they bought me a toy or a treat so I would feel better. They put less pressure on performing well in school even when they thought I could do better.
It’s that these gestures and accommodations didn’t acknowledge the far-reaching impact of psoriasis in my life. They didn’t see the bullying, name calling, and teasing on the playground or locker room. My family didn’t go into the phototherapy unit with me when I was a child. The lights scared me as I put on green goggles and stood in the box for up to ten minutes or more. They couldn’t grasp how angry and frustrated I felt inside having to apply messy ointments. They told me to stop scratching, but didn’t experience the intense unrelenting itchiness and bleeding sores.
The home also became a kind of prison for me with my brother. While siblings certainly do argue, and even fight, my older brother tormented me. I felt like a monster when he called me “tar baby” with my coal tar treatments. With my parents working long hours trying to make ends meet, they left me alone with him. I often didn’t feel safe in my own home.
In my home growing up, I was one of the 73% who didn’t feel my closest family comprehended what it’s like living with severe psoriasis.
My Family Today
My family today is a different story. I’m grateful that those times passed, and we could discuss and heal from what happened in those early years. My parents even admitted that they didn’t understand how much I endure with psoriasis until my father was diagnosed with it himself a couple years ago.
My wife of twenty-two years and three children (now 15, 17, and 21 years old!) give me immeasurable support and encouragement. First and foremost, they listen. When I have difficult treatment decisions they inquire about the different options and help me think through the pros and cons of each one. They don’t have psoriasis themselves, but they ask questions that bring out the emotions and challenges of living with it.
One of my most difficult moments I’ve had with psoriasis came when my kids were elementary school age. I broke down in tears feeling empty and wanting to give up on trying any treatments even though I was ninety-five percent covered in plaques. One by one they came over to me to share a moment—no words or advice, just a hug and a tissue. Even though that’s one of my low points with psoriasis, it’s a high point thinking of my family’s loving support.
Now when I travel for psoriasis advocacy meetings or trips, they bless my coming and going and pick up the slack at home. At the last few local psoriasis meet-ups and fundraising walks, they all joined and volunteered. They even “like” my Facebook posts and (sometimes) read my blogs. Today I can say I’m one of the 27% who feels my closest family understands what it means to live with psoriasis even if they won’t be able to completely know.
My Church and Psoriasis Family
I would be remiss if I didn’t mention two other families—my church and psoriasis families. Those who support me at church, or those whom I've come to know with psoriasis, probably don’t count in the PsoHappy family survey. But they definitely count as important in my life. Not everyone in these communities gets it, but enough do to warrant the risk of reaching out.
Do you anxiously anticipate a psoriasis relapse?