Conquering Challenging Conversation: Talking about Psoriasis

Psoriasis is a frequently misunderstood condition that can cause stress and social anxiety. The social and emotional impact of psoriasis can be overwhelming to talk about. Those living with psoriasis know that talking about it can be challenging and frustrating on a daily basis. We asked our community what kinds of issues they’ve faced or experienced when it comes to their psoriasis, and the responses were varied and thoughtful. Many of our community members shared snippets from some of the most difficult conversations they have had when it comes to their psoriasis.

No…it’s not a rash

A condition that has rash-like symptoms, like psoriasis, can be difficult to explain. Many misconceptions can come along with these visible features, and can cause a lot of stress or feelings of social anxiety. Many are faced with questions, comments, and awkward encounters regarding their skin, as well as frustration with feeling misunderstood or mislabeled.

• “It’s hard to reassure others that it’s not contagious”
• “I’ve had to explain that it’s a rash that never goes away”
• “People do not understand why you can't 'fix' it!”
• “Trying to explain to others what it is and that it is not contagious has been a challenge. People have a hard time believing for some reason, they look at me like I'm lying to them”
• “It’s more than a skin rash”
• “I have had to tell people that they can’t ‘catch’ my skin condition”

Fatigue

Like other autoimmune conditions, individuals with psoriasis can experience fatigue as a direct result of their psoriasis, or as a result of stress or other psoriasis-related issues that can impact sleep. Fatigue is one of the most frustrating and common issues reported in our community, yet it’s difficult to get others to understand. Explaining the feeling of being frequently exhausted can be challenging, and many feel like others around them don’t truly get it.

• “People just cannot seem to grasp that a "skin rash" can cause exhausting fatigue”
• “The fatigue!”
• “I wish more people understood the impact psoriasis has on me…Even sleeping is difficult”
• “People just cannot seem to grasp that a "skin rash" can cause exhausting fatigue”

Opening up and educating others

Many people simply don’t understand what it’s like living with psoriasis. Everyone’s experience can be different, and some issues may be unpredictable or unexpected. Opening up about your battle and educating those around you may be hard, but it can help others understand all that you are facing.

• “It’s a chronic condition that I have to deal with on a regular basis that comes and goes, and for the most part, the flare-ups are out of my control”
• “People don’t seem to understand that at times I’m playing the ‘where is it going to pop up next?’ game”
• “It’s so stressful to worry about; everything can trigger a flare-up. I am constantly fearful of germs, lotions, and scared to try any new meds”
• “People have such preconceived opinions about psoriasis”
• “I wish they would understand it’s so stressful, yet the stress is a trigger”

Intimacy

Having psoriasis can affect your relationships with others in many ways. It can be difficult for family members to see a loved one dealing with a chronic condition like psoriasis, which can put a strain on your relationship. It can also affect your confidence and body image while trying to form new relationships, especially intimate ones. Psoriasis can affect all areas of the body, including our most private areas.

• “It’s so hard explaining to someone what it is and trying to be in an intimate relationship with someone. Also, explaining to them that you’re just not in the mood due to flare-ups is the hardest”
• “My husband tries to be as understanding as possible, but sometimes I just feel ‘gross’”
• “It was difficult to explain how hard it is to be intimate”
• “It’s hard to be comfortable when it comes to intimacy”
• “I find it very difficult starting a new relationship”
• “I find myself avoiding intimacy out of fear”

No matter where you’re at in your psoriasis battle or what you’re going through, you shouldn’t have to deal with everything alone. Although it can be frustrating at times, it’s important to help people around you understand the impact psoriasis has on your life. Talking with others about your psoriasis, even in online communities like ours, can relieve some of the stress that comes along with the condition. More people than you expect may be receptive, understanding, and willing to help. Always remember our community is for you too, whenever you need support!