Speak Clearly: Perspectives on psoriasis

Karin is a patient and advocate for people with serious skin conditions, based in Austria.

I have lived with a serious skin disease all my life, but I always had trouble finding a reliable source of information for people with my condition. That’s why I founded a website with information and tools for people with severe skin diseases, so I could help others learn about their condition and ultimately feel more comfortable in their own skin.

Having gained a lot of experience with my chronic skin disease over the years, I learned that every psoriasis patient is different and there isn’t one answer for everyone. It’s important to be your own advocate and speak up about your psoriasis needs. Here are a few tips:

See a doctor!

At the start of my journey, I was very reluctant to go to the doctor at all because I was ashamed. I had to learn to trust her in order to share the most intimate details about my disease. You should always be completely honest with your doctor; no question or concern of yours should be taboo. If you cannot open up, then your current doctor may not be the right one for you. After a meeting with a doctor that diagnosed me without an examination, I looked for another. It is important to me that my doctor takes me and my disease seriously. Opening up to your doctor will help them to find a management plan that is right for you.

If you are wondering what you should talk to your doctor about, this discussion guide may help you plan ahead.

Be Prepared!

When time is limited, it’s important to be prepared. The better you know yourself and your disease—and the more openly you talk to your doctor about it—the faster they can determine the best management plan for you.  

Psoriasis is a systemic disease (meaning it affects more than one part of the body, not just the skin), and can be mild or moderate to severe. There are constant scientific advancements in the field, and depending on the type of psoriasis you have, different management options. Talk to your doctor about the different options available and together you can decide which might be best for you. Just because you haven’t found what works for you, doesn’t mean that it isn’t out there.

While there is no cure for psoriasis, you can work with your doctor to find a management plan that fits well with your lifestyle; use this discussion guide to determine your individual psoriasis needs.

Be your own detective!

Outside of your doctor’s office, there is a lot of information out there about psoriasis. However, the abundance of information on the Internet can be confusing. It is often difficult to know where to look—let alone to understand what is really relevant for you. There is also a lot of false information out there and when researching my own skin disease, I learned to pay attention to certain warning signs such as:

• When exaggerated, unrealistic promises are made.
• If a product’s efficacy (effectiveness) is not supported by scientific evidence or the manufacturing process cannot be clearly traced.
• If the exact details of the ingredients are missing and/or there is no legal notice on the website.
• When so-called experts are cited, but they cannot be found on common search engines.
• When the success stories of self-proclaimed patients repeatedly appear in various forums, usually illustrated with “before and after” pictures.

If you are unsure about information you have found ask your doctor.

Above all, trust your gut and don’t be fooled by unrealistic promises. However tempting they may sound, the truth is there is no quick miracle drug or cure for psoriasis.

Your community helps you!

For a long time, I was ashamed of my skin condition and believed that many people would reject me and find me disgusting. My biggest advice is not to bury your head in the sand: talk to your friends, your family and especially to your doctor. Your doctor can be a big part of your support system and is there to help you in addition to your friends and family. And remember, most importantly: you’re you—and you’re not defined by your psoriasis!

In the meantime, hear from others about their experiences with psoriasis, it may inspire you!

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