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. For some patients, you didn’t always know which treatments would and would not work for you, and for others, you didn’t always know which healthcare providers to visit. To better serve our recently-diagnosed community members, we asked our psoriasis 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.”
When most people think about psoriasis, they picture the red, scaly patches (known as plaques) that affect between 80% and 90% of patients. However, because psoriasis a chronic autoimmune condition, patients can experience a variety of symptoms, often affecting the skin, nails, and joints. In addition to skin plaques, some of our community members experience joint pain and swelling, itching and burning, and fatigue. Psoriasis can also affect the eyes, ears, mouth, and gut.
Although every person will experience different symptoms, many community members wish they had known about all the ways psoriasis can affect the body. For some of you, you didn’t know that your joint pain could be caused by psoriasis, and for others, you didn’t expect the pain or uncomfortable flare-ups. Although some patients experience difficult symptoms related to their psoriasis, many of you have worked with your healthcare provider to develop an effective treatment plan, allowing you to manage and cope with all of your 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. For many of you, you didn’t expect that people would ask about your psoriasis skin changes. For others, you didn’t know that psoriasis might change how you go through your daily routine.
For many community members, accepting their diagnosis, and adjusting to life with psoriasis, took some time. However, 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, 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".”
Healthcare providers are experts in many things. However, not all healthcare providers (including dermatologists!) have experience treating psoriasis. As described by our community members, providers have not treated psoriasis have the potential to misdiagnose or mistreat psoriasis symptoms. Therefore, for some of you, getting a diagnosis or finding an effective treatment was not an easy process. While it can be frustrating to deal with under-informed healthcare providers, by sharing your experience, you are helping the next patient to find answers to their psoriasis questions!
To effectively manage your psoriasis, you need healthcare providers who know how to treat psoriasis, but also who will support you, and listen to you! For many community members, finding the right healthcare provider takes patience, and it can even be a little awkward to tell a provider that you found someone else. While choosing a new provider can be stressful, you deserve someone who is going to give you the best care possible, and at the end of the day, your health matters more than the healthcare provider you leave behind.
I Wish I Had Known… How Diet Could Affect Psoriasis
- “Nutrition, and the healing properties of certain foods.”
- “Yes - food intolerances!”
- “What to eat”
Although there is no proven relationship between psoriasis and diet, many patients find that certain foods influence their psoriasis symptoms, and how they feel overall. According to these patients, including several of our community members, eliminating certain foods or maintaining a specific diet helps them to control their psoriasis. For example, many patients find that a plant-based diet that is high in fruits and vegetables helps reduce their psoriasis symptoms. Because Type 2 diabetes, heart disease, and obesity are more common in people with psoriasis, maintaining a healthy diet may also help to lower your risk of developing these conditions.
If you think that certain foods may be making your symptoms worse, try keeping a food and symptom journal. Once you’ve narrowed down your food triggers, consider eating or eliminating the foods that make your psoriasis symptoms better or worse. Be sure to talk to your healthcare provider before making any major dietary changes.
I Wish I Had Known… That I Wouldn’t 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!”
As described by our community members, psoriasis can impact many parts of your body, and influence many aspects of your life. 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, your psoriasis has allowed you to appreciate all the love in your life, and all the people who support and understand you. For many of you, the online psoriasis community has helped you to feel less alone, while your friends and family members have found ways to show you how much they care.
If you are struggling 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.
Do you anxiously anticipate a psoriasis relapse?