Why Having a Support System Is So Important When Living with Psoriasis
Lynn Sherwood, 47, of Jackson Hole, Wyoming, describes herself as a happy woman, typically brimming with confidence and a “superhero smile.” Lynn has been dealing with psoriasis for more than half her life, and was officially diagnosed last year. During her flare-ups, she says, “Being covered in hundreds of red, scaly bumps wipes the smile away pretty quickly.”
Lynn says quality time and physical touch are two of her biggest love languages, adding, “My embarrassment about my appearance robbed me of both.”
While flaring, her desire to give hugs evaporates. Walking into a room full of people, something she normally enjoys, suddenly feels mortifying. “I avoid people and gatherings like the plague,” she says.
As you can imagine, those moments diminish the happy spirit Lynn is proud of and known for. “There have been times when I have felt alone, even rejected, when dealing with psoriasis,” she says.
Though everyone’s struggles may vary, Lynn’s words reflect sentiments commonly echoed among psoriasis patients: The condition can make you feel more alone during times when you need other people most.
You’re Not Alone in Your Feelings
If you ever feel isolated or weighed down by your condition, know that you’re not the only one who feels this way. “Psoriasis can wreak havoc on a person’s self-esteem and identity,” says licensed mental health counselor Alissa Schneider of Sunshine Psychological Therapy in Florida. “Because the psoriasis can play such a big role in an individual person’s life, it can become integrated as part of one’s identity. Sometimes, when people struggle with chronic illness, it can be a challenge to separate their true identity from the illness itself.”
Schneider specializes in helping people with chronic illness, often working with those who have psoriasis and psoriatic arthritis. She says many people have a feeling of helplessness. Knowing that no lifestyle change or medication will cure them completely can cause them to lose faith in doctors and the medical system—it can even contribute to the development of PTSD-like symptoms, since the illness and the medical treatments alike can be traumatizing.
All of this can contribute to feelings of isolation, especially because the physical symptoms of psoriasis leave some patients wanting to hide from the world.
And that’s exactly why a strong support system is so important.
Why You Need a Support System
“Having a support system can help a person to have an identity outside the illness,” Schneider says. “It can also serve as a tool of distraction, and a way to cope with the illness.”
Your support system doesn’t have to look like any one thing. It could be family and friends. It could be co-workers you feel you can open up to. Or people you meet online who are struggling with the same condition and know what you’re going through. Lynn counts her dermatologist as part of her support system, explaining, “Her educated and patient support has been instrumental to my learning more, and given me a foundation of knowledge so that I can talk to my husband and others about [my condition] in breadth and depth.” That, she explains, has been incredibly important to her.
A good network of support should include people you know you can go to when dealing with the emotional and physical aspects of this disease. Find the people you can talk to, but also the people you can call for help when you’re not feeling your best. The ones who would happily take your kids for the afternoon, or who would be willing to pick up your groceries when you just can’t, for example.
“Having good friends and family around can teach us that we are still loved, in spite of the illness,” Schneider says.
Some people have a harder time than others building a support system for themselves. If you’re lucky enough to have a strong, close circle of friends and family—definitely start there. But if you don’t have the best relationship with your family, or you don’t have close friends you can count on, there are ways to find people you can rely on.
“Thank goodness for the internet!” says Audrey Christie, M.S.N., R.N., a nurse who uses a holistic approach to treat autoimmune conditions. “That is often the best place to find psoriasis support.”
People from all over the world convene online, sharing their experiences and offering help and support, many from the comfort of their own homes. Kopa for Psoriasis offers a space for people with psoriasis to connect with other people living with the condition, to both find and offer support. You may also want to give social media a go.
“I have connected with other people in a Facebook group called Psoriasis Support Group,” says Lynn. “We can find camaraderie in shared experience.”
When interacting with other people in the group, she says she finds herself feeling gratitude while also learning what diets and medications are working for others.
“There are some really great hashtags to follow on Instagram,” adds Christie. Following a hashtag can lead you to other people living with the condition whom you may also want to follow and connect with. Some often-used hashtags within the psoriasis community include:
While the internet can make connecting simple, don’t discount the possibility of finding people in your life who can relate to what you’re going through. “You would be surprised how many people just in your daily life suffer from psoriasis” says Christie.
The only way to find out may be to talk openly about it yourself. The more you open up about your condition, the more people you’ll likely discover share your diagnosis or are dealing with something similar. Plus, you may give them more confidence to talk openly, as well.
Schneider suggests attending a support group in your area for people struggling with psoriasis and other chronic illnesses. “It’s great to be able to have a group of people who know what you’re going through and can reinforce that you are not alone.” Search for support groups near you at PsychologyToday.com.
Advice for Those Who Want to Help
Often, people want to help loved ones with psoriasis but don’t know where to start. Lynn says that supporting someone with psoriasis can be done in very simple ways. She feels supported when others, “make a choice to sit with me, to touch me, to listen, and to learn.”
She wants others to know she is not contagious, and that they do not have to be afraid of being near her. “And, let’s be honest—my spots might not be attractive, but I’m still me.”
And you’re still you. Conveying that to the people you love and talking to them about what they can do to help support you, is one of the best ways to make them an essential part of your support system.