Community Views: What I Wish I Had Known When I Was First Diagnosed

If you have plaque psoriasis, you can probably name a few things that you have learned over time but wish you had known when you were first diagnosed. You may not have known which treatments would and would not work for you, or you may not have always know which doctors to visit.

To better serve our recently diagnosed community members, we asked the PlaquePsoriasis Facebook community about the things they wish they had known when they were first diagnosed. If you want to learn more about managing and coping with psoriasis, check out their responses!

I wish I had known all of the possible symptoms

“The fact that it's an autoimmune condition and not just a topical skin issue – I could have solved the mystery of my joint pain years before I did.”

“Possible joint deterioration.”

“I wish I had known the pain could get so severe. . . . I would have prepared myself.”

Although every person will experience different symptoms, many community members wish they had known about all the ways psoriasis can affect the body. Some did not know that their joint pain could be caused by psoriasis. Others did not expect the pain or uncomfortable flare-ups.

Although some people experience difficult symptoms related to their psoriasis, many have worked with their doctor to develop an effective treatment plan. This has allowed them to manage and cope with all of their psoriasis-related symptoms.

I wish I had known how psoriasis could change my life

“How debilitating it is.”

“How much my life was about to change and that I would never be myself again!”

“How much everything changes . . . and changes in lifestyle.”

“It would change my life and how other people viewed me.”

Psoriasis doesn’t just affect the body. As described by some community members, psoriasis can influence every part of your life, from sleep to social activities to work to personal relationships and intimacy. Many people did not expect that people would ask about their psoriasis skin changes. Others did not know that psoriasis might change how they go through their daily routine.

For many community members, accepting their diagnosis and adjusting to life with psoriasis took some time. But even though psoriasis has the potential to change many things, many community members have found ways to control how much psoriasis influences their day-to-day life.

As your symptoms change, you may need to learn new ways to cope. But no matter what stage of your psoriasis journey you are in, your peers are here to support you!

I wish I had known that not all doctors understand psoriasis

“I wish I had known how undereducated the dermatologists are inadequately treating psoriasis as severe and resistant as mine is. . . . Was treated as a guinea pig for many failed 'treatment' attempts.”

“Doctors put me on corticosteroids, which stunted my growth before I was taken to a dermatologist that properly diagnosed it.”

“My then dermatologists told me that it would be gone by summertime. . . . I was 15 yrs old! If I was just told the truth!!!”

“My joints ached when I was a kid. The doctors said it was just 'growing pains.'”

Doctors are experts in many things. However, not all doctors (including dermatologists!) have experience treating psoriasis. As described by our community members, doctors who have not treated psoriasis have the potential to misdiagnose or mistreat psoriasis symptoms. Therefore, for some people, getting a diagnosis or finding an effective treatment was not an easy process.

To effectively manage your psoriasis, you need doctors who know how to treat psoriasis but also will support you and listen to you! For many community members, finding the right doctor takes patience. It can even be a little awkward to tell a doctor that you found someone else. While choosing a new doctor can be stressful, you deserve someone who is going to give you the best care possible.

I wish I had known how diet could affect psoriasis

“Nutrition, and the healing properties of certain foods.”

“Yes – food intolerances!”

“What to eat.”

Many patients feel that certain foods influence their psoriasis symptoms and how they feel overall. For several of our community members, eliminating certain foods or maintaining a specific diet helps them control their psoriasis symptoms.

If you think that certain foods may be making your symptoms worse, try keeping a food and symptom journal. Once you have narrowed down your food triggers, consider adding or removing the foods that make your psoriasis symptoms better or worse. Be sure to talk to your doctor or a registered dietitian before making any major dietary changes.

I wish I had known that I would not be alone

“Community. Ten years I went thinking that I was the only one with psoriasis as severe as me. There is so much peace in knowing you aren’t alone. Being able to talk to others that intimately know what I am going through is like a treatment in itself.”

“Our family connection.”

“Having a place to go and see I am not alone!”

Psoriasis can take a toll on your emotional well-being, making a strong support system critical to managing your condition. According to several community members, psoriasis has allowed them to appreciate all the love in their life as well as all the people who support and understand them. For many, an online psoriasis community has helped them feel less alone while their friends and family members have found ways to show them how much they care.

If you have been diagnosed with psoriasis, consider connecting with your psoriasis peers to ask questions, get help, and learn more. Psoriasis can be difficult, but with the support of the psoriasis community, you are never alone.