Whenever I walk into a room, it appears as though psoriasis speaks on my behalf. The flaky, dry, crusty patches of skin which encroaches my body are loud, gripping the attention and curiosity of those around me. Oftentimes, my psoriasis steals the show and becomes the center of attention, casting a dark shadow over the essence of who I am as a person.
The untold narrative of psoriasis: telling the story beyond my skin condition
People look at me and are no longer concerned about the depths of my soul, but more so intrigued about my skin. Other times, people misinterpret the narrative of my skin. To strangers who don’t know I have psoriasis, my skin speaks the language of eczema, bug bites, or some nameless rash. Even when I try to explain my condition, sometimes people only hear what they want to hear and continue to create their own conclusions accompanied by unsolicited advice.
In the past I tried to silence my psoriasis the best I could by wearing long sleeves or pants. In my mind, covering my inflicted skin was smothering its loud, brash, and humiliating voice. To be honest, psoriasis only tells a very small part of the story, although it seems to be the loudest and most noticeable part of living with this disease.
Communicating your needs to your dermatologist
No matter how boisterous the voice of this disease can be, psoriasis does not have the ability to articulate how I truly feel and what my needs are. This is where the problem lies, especially when it comes visiting the dermatologist.
I’ve left many dermatology appointments dissatisfied because I didn’t speak up above the loud noise of my psoriasis. Most doctors see the severity of my skin and begin throwing out an assortment of treatment options without ever asking, “What’s bothering you? or “What’s important to you?” I left their offices unfulfilled, hopeless, and voiceless because I allowed my psoriasis to be the loudest thing in the room.
As knowledgeable as dermatologist are, they don’t know how psoriasis affects me personally. Yes, psoriasis many look painful on the outside, but they fail to consider the mental and emotional pain I deal with. That is unseen and muzzled. Doctors cannot look at your skin and really know what’s bothering you. All they can do is assume.
What to share with your doctor about psoriasis
As patients, it’s our job to share the invisible distress that accompanies this disease. Here are three concerns with a list of questions to start sharing with your doctor:
- What bothers you the most: Is the flaking unbearable? Do you have joint pain? What is your primary complaint? What is your main goal with treatment?
- How you are emotionally: Are you depressed? Are you anxious? How much does psoriasis hinder you from social activities?
- Does psoriasis affect your sex life: Do you avoid sex due to the appearance of your disease? Do you have anxiety before sex? Is there psoriasis on your genitals? (Many times, genital psoriasis goes untreated because people are too embarrassed to speak up about it.)
Only you can articulate your greatest challenges and concerns. As loud as psoriasis may be, it doesn’t speak for itself. You must find your own voice and speak with confidence, not only to doctors but to everyone who thinks they have your story figured out. We must advocate on behalf of our condition to spread awareness and receive the most effective treatments.