Speak Clearly: Perspectives on psoriasis
Psoriasis is like a journey or trip to a new place. It begins with uncertainty—but can open you up to learn more about yourself, or, in this case, your disease. Think of me as your psoriasis travel guide; I’ve been on a similar journey and want you to feel supported so you can learn to feel confident in your skin, as I have too.
First Stop: Diagnosis
My journey began at age 21 when I was diagnosed with psoriasis and initiated the lifelong process of trying to understand my disease. I would ask myself daily: what does it actually mean to be affected by a skin disease like psoriasis?
As I continued, a picture slowly began to emerge in my head of what psoriasis is and how it manifests. I began to realize my symptoms weren’t just physical. Apart from the flare-ups and the near-constant itching, I soon became stressed and had my first fears. How will other people react to my plaques? What if the disease continues to spread over my body? I was consumed.
An Unexpected Detour: Fear
As it turned out, I did not have much time to think about it. A few months after my psoriasis diagnosis, I found out that I also had psoriatic arthritis. Why me? Until a few weeks ago I had never heard of psoriasis and certainly not of psoriatic arthritis—and now I had both.
As I spoke with my doctor and read books, I learned many people with psoriasis also suffer from additional diseases like psoriatic arthritis—30 percent of psoriasis patients—and it is an inflammatory condition in which the joints become painfully inflamed and, over time, can lead to irreversible joint damage if not properly managed.1,2 Every time I had a pain in my ankle or knee, I immediately thought my psoriatic arthritis was getting worse. The scariest part was not knowing what would happen next.
My doctor let me know it would be important to work with both a dermatologist and rheumatologist to manage my psoriatic arthritis. I stayed in close contact with my doctor, a very important resource throughout my journey, and I would encourage you to stay close with your doctors as well!
The Friends I Met Along the Way
Through my work at Farbenhaut (German for “colors on the skin”), a blog for people with psoriasis, I soon discovered I wasn’t alone in my fears. Many other people with psoriasis experience similar fears ̶ the biggest one being the fear that things will never be the same and there was nothing we could do about it. By sharing our stories, we learned from each other.
Through these relationships, I learned the importance of taking an active role in my journey and communicating with my doctor. Close consultation with your doctor is essential, especially with psoriatic arthritis. Together with your doctor, you can develop a treatment plan to control your psoriasis and maximize your quality of life.
Don’t Forget Your Passport!
In the beginning of planning any trip, preparation is key—you have to do a lot of homework, talk to other travellers and experts, and make sure you have all the documents, or medical records in our case, you need. To help you prepare, you can hear from fellow psoriasis travellers on websites like Let Me Be Clear and Farbenhaut. Preparation is the key to living calmly with psoriasis, so the disease doesn’t keep you from living life.
Dream Destination: Feeling Free
By taking action from the start, I was able to break free from the burden of my disease. Speaking up and demanding the best care got me to where I am today—free to be me—and it can do the same for you! It is important to talk to your doctor and speak up about your needs so you can get back to feeling free as soon as possible (and here are some resources to help you get started).
- Diseases & Conditions: Psoriatic Arthritis. 2019. American College of Rheumatology. Available at: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Psoriatic-Arthritis. Accessed on May 15, 2020
- Eder, L., et al. The Development of Psoriatic Arthritis in Patients With Psoriasis Is Preceded by a Period of Nonspeci‑c Musculoskeletal Symptoms: A Prospective Cohort Study. Arthritis Rheumatol. 2017 Mar;69(3):622-629. doi: 10.1002/art.39973.
Get clear with your doctor
You deserve to feel confident in your skin, but how do you have a clear conversation about your psoriasis goals with your doctor? Sometimes speaking up can be the hardest part.
Your voice makes a difference
Be clear about your goals. The power to speak up, feel confident and demand the best care is within you. Sharing your story could be your next step to feeling free from psoriasis—and possibly inspire others to do the same.