I’ll never forget that moment… My partner kneeling before me in the dim room, his eyes shining with love. He asked me, and I said yes!
Yes, that’s the right lotion to rub on my itching legs.
Not what you were expecting? Welcome to the chronic illness world.
When I was a kid, I would hear these commercials talking about “the heartbreak of psoriasis,” but I always thought they were kind of silly. Now that I live with moderate to severe plaque psoriasis, I understand that heartbreak is all too real. The heartbreak of new symptoms just when I thought they had settled down. The heartbreak of having to back out of an event I had been looking forward to because I’m too tired and in too much pain. The heartbreak of itchy plaques keeping me from sleep, of saying goodbye to certain beloved clothes that irritate my skin.
After nearly a decade together, my partner and I have developed a new romantic repertoire now that plaque psoriasis has joined our life. We don’t have dinner and dancing dates. We have long chats in cars and doctors’ waiting rooms, followed by grabbing lunch on the way home. He still hangs on every word… well, every word the specialist says, typing notes into his phone to share with me later so I don’t have to remember everything from my appointment with my foggy brain.
In many ways, it is a fairy tale. I know how hard it can be to find or keep a relationship when chronic illness joins the family. Not everyone can stand to watch you fail to resist going after your skin with your nails like it’s a winning scratch-off lotto ticket. Year-round snow isn’t so Hallmark-movie cozy when it’s falling from your scalp. Fatigue starts dictating the social calendar — and it loves to cancel things at the last minute. At the heart of it, not everyone is ready to come to terms with the idea that incurable chronic illness can affect anyone anytime, no matter what you do.
Those who can make space for the reality of chronic illness in their loved one’s life lose the illusion of control over their bodies, the ability to deny that it could happen to them. In exchange, they may gain richer relationships with their loved ones and sometimes even with life itself.
Once I realized I could stop trying to hide my plaque psoriasis from my partner, I could be more relaxed and actually pay attention to him instead of focusing on whether a sleeve or blanket was in the right place. (Turns out that he’s much more interesting than my sleeves, so being vulnerable was definitely worth it.)
Plaque psoriasis rewrote the story of my life. It doesn’t look like I expected, and neither does my skin. It took a while for me to let go of my expectations of plaque psoriasis and be present in my actual life, and I’m so grateful that my partner decided to do the same. For those who are looking for partners, I’m writing this to let you know it may be possible, remembering that it might be a little different than you imagined. And for those who are partners of someone who has a chronic illness, I’m writing this to encourage you to take a chance, to stick around to face the scary stuff and see what magic and deep connection may wait for you on the other side. May we all find our own unique versions of happily ever after.
Jo Eckler is living, writing, and trying to laugh with multiple chronic conditions in Austin, TX. Dr. Jo has been a psychologist for 14 years and living with chronic illnesses since the age of 15. Since they're a recovering overachiever, Dr. Jo's also an author, a coach, a registered yoga teacher, and is trained as a death & mourning doula. Their mission is to help others find more self-compassion, meaning, and conscious choice in their lives. The author of I Can't Fix You--Because You're Not Broken: The Eight Keys to Freeing Yourself from Painful Thoughts and Feelings and You Can't Fix Them--Because They're Not Broken: A Sustainability Guide for Tired Helpers and Healers, they’ve also appeared in numerous media outlets, including O Magazine, Health, Bustle, and Huffington Post. They have been known to dress as a unicorn--repeatedly. Learn more at www.joeckler.com
jo-eckler