Facing Fear, Finding Hope: An Honest Conversation on Psoriasis
Facing Fear, Finding Hope: An Honest Conversation on Psoriasis
According to the National Psoriasis Foundation (NPF), more than 8 million Americans are living with psoriasis, a condition related to the immune system that causes raised, red, itchy, scaly patches on the skin. But psoriasis is more than just a skin disease. Itâ€™s an inflammatory condition that can affect your entire body â€” and your emotional health.
In fact, nearly 60 percent of people with psoriasis say itâ€™s a large problem in their everyday life, according to the NPF, and the more severe the psoriasis, the more negatively it impacts quality of life.
Fear is especially common if you have a visible condition like psoriasis. You may be afraid of how other people will react to the condition. You may worry about how psoriasis will impact your body image, self-esteem, relationships, and ability to do activities you enjoy. Or you may fear that youâ€™ll never find a treatment that works for you.
When Psoriasis Strikes: â€œI Was Really Freaking Outâ€
When Grego first noticed dry patches of skin on her legs, she didnâ€™t think much of it and assumed applying lotion would take care of it. â€œBut when I started seeing it get worse and worse, I knew it was something else; I just didnâ€™t know what,â€ she says. Naturally, she turned to â€œDr. Googleâ€ and started researching her symptoms, and when psoriasis kept coming up, she decided to go see her doctor. By the time she received her psoriasis diagnosis, most of her body was covered in skin lesions, which took a toll on her emotional health.
â€œI felt isolated. I felt a little alone. I wasnâ€™t sure what was going on. It was all happening very quickly. What started in a little area, within four months became my entire body: It was in my ears, on my scalp, on my back, on my arms, my legs, everywhere,â€ she says. â€œI was really freaking out.â€
Being covered with psoriasis lesions made Grego reluctant to go out in public. â€œI didnâ€™t want my family to be embarrassed,â€ she says. â€œ[My] daughter asked me to go to the pool with her, and I actually had to put on a bathing suit and go to a public pool with my children. â€¦ People see me getting in and out [of the pool], covered in plaque psoriasis, and everyoneâ€™s looking at me, wondering Whatâ€™s wrong with her?â€
Thatâ€™s been one of the bigger challenges Grego has faced. â€œPeople look at you a different way. They have these judgments about you, and they donâ€™t really understand that this is not just a skin disease; itâ€™s an autoimmune disease,â€ she says. â€œThatâ€™s one of the reasons I talk about it and get involved. â€¦ If people know [more about it], it helps me cope with it better.â€
Finding Support â€” and the Right Provider â€” Can Help Ease Psoriasis Fears
Enlisting a â€œtribeâ€ of people you can open up to and turn to can help you navigate your psoriasis care. â€œItâ€™s very important for anyone who has psoriasis to have a good support system, from family members to friends who can understand not just what the disease is doing to them, but [also] the emotional side effects that come with psoriasis,â€ says Medina.
The NPF also provides free personalized support to help answer any questions you have. They can even help you find a healthcare provider through their patient navigation center, which Grego herself used to find a new provider when she wasnâ€™t happy with the doctor she was seeing. â€œ[The patient advocate] did a search within my area and found me a doctor five minutes away from my home,â€ she says, â€œwho to this day Iâ€™m currently treating with, and Iâ€™m very happy with our relationship.â€
In addition to a dermatologist, you may want to consider seeing a therapist if youâ€™re dealing with anxiety or depression related to psoriasis. â€œNot everybody â€” not even your therapist â€” can relate to having a skin disease that everyone can see on a daily basis, and you feel judged and feel that people are looking at you all the time,â€ says Dr. Wieder. She suggests finding a therapist who specializes in treating people with skin diseases.
These resources can help you feel less alone and provide a sense of hope. â€œToday, Iâ€™m grateful that Iâ€™ve been able to find the research that Iâ€™ve found, have the community that I have, and the support from my family and friends as I go through this journey with psoriasis,â€ says Grego.
Fear Not: There Is Hope for Clear Skin
Wieder says itâ€™s common for people with psoriasis to be afraid theyâ€™ll never have clear skin. â€œPatients come in feeling hopeless,â€ she says. But your doctor should take the time to educate you about the condition and your treatment options so you can work together to find treatment that gets you clear, she explains. â€œThe goal is, when [people with psoriasis] leave my office, that they have a lot of hope. â€¦ Our main goal is to really get them clear.â€
And with todayâ€™s treatment landscape, â€œthereâ€™s never been a better time to have psoriasis,â€ says Dr. Nandi. â€œWe have so many tricks up our sleeve: so many medicines and treatment options that [clearance] can really be a reality more than ever before.â€
Still, one of the biggest fears Medina says she hears from people through the NPF is that they wonâ€™t find a treatment that works.
But there is hope. â€œThere are large percentages of people that are actually achieving 100 percent clearance,â€ emphasizes Wieder. â€œAnd we never in a million years were talking about that even just a few years ago. So the [treatments] that are coming out in todayâ€™s day and age of psoriasis, weâ€™re talking â€¦ 100 percent clearance of psoriasis, and quite a large number of people can look forward to that.â€
Grego has high hopes of achieving clear skin someday. â€œIâ€™m grateful I have gotten as far as I have,â€ she has said, â€œand have not lost hope that one day I will see my skin clear of psoriasis.â€
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