My road to psoriasis advocacy started in 2011. I attended a volunteer conference sponsored by the National Psoriasis Foundation. I was still uncomfortable with my disease and was being mentored by a young woman around my age who also had psoriasis. I met her through the One-to-One Mentoring program created by the NPF.
Since then I have now become the mentor, which is a bit surreal for me, coming from a place where I once was so ashamed. I have the opportunity to mentor in a variety of ways — mostly people come directly to me seeking help on how to cope with this disease. Here are the seven things I’ve learned as a mentor in the psoriasis community.
There is no one size fits all
Everyone with psoriasis is at a different place mentally and physically. I’ve had to learn how to approach each in a unique way depending on the situation. There isn’t one method that is appropriate for every person with psoriasis. Some people need one-to-one assistance on coping, while others do well with a simple online support group. Others need consistent support, while some only need support when they are faced with uncomfortable situations.
A small amount of psoriasis can be just as detrimental as someone covered from head to toe
Being 90 percent covered for most of my life, I use to think people with less psoriasis were better off than those who are covered. This is not true. Through mentoring I’ve learned that one plaque of psoriasis can be just as life-altering for some as psoriasis that completely covers a person.
The use of friendlier words
After being a camp counselor this past summer, at a camp designed for kids with skin issues, I learned there are friendlier terms to use other than words like “disease.” Disease carries the stigma of being unappealing and contagious. The kids at camp always said “condition” when engaging in conversations about the troubles with their skin.
You may be surprised by how much you have in common with those around you
There were people I’ve known for a decade, through high school and college, who had psoriasis and we had no idea of sharing the same condition until I started to publicly speak out about my disease. I’ve had conversations with several people I’ve interacted with on a regular basis who have contacted me saying they have a skin condition and are suffering in silence. These are people I passed by every day. It wasn’t until I started to speak out about my experiences that they felt comfortable enough to reach out to me. Many were thankful that someone was speaking out. Others just needed emotional support. It goes to show that we don’t talk to and relate enough to those around us. You might be surprised that you aren’t as “alone” as you may have once thought.
Mentoring is self-therapy
At this moment, I’m mentoring a 13- and a 19-year-old. Both reached out to me via Facebook. Both are African-American women with psoriasis. As they talk to me and ask questions, it’s like I’m talking to the old me. The same issues I dealt with as a teen are the issues they are dealing with now. Mentoring them has been like therapy for me. It makes me reflect on how I once was, and it also gives me the motivation to continue to speak out about this disease so I can be a voice for those in the psoriasis community who are too afraid to speak out themselves.
Listen more than you talk
A lot of the people I mentor just really want somebody to listen to them and be able to relate. They don’t necessarily what a bunch of advice. People with psoriasis just appreciate being able to talk to someone similar to them. I listen a lot more than I talk these days, and provide resources only when necessary. The most helpful thing I can do is just be there for someone in need.
A lot of people admire and are inspired from a distance
Sometimes I think to myself, “is my advocacy really making a difference? Am I really reaching people?”
The answer is yes.
You would be surprised how many people are silently inspired and watching your progress with your disease. I’ve received messages and comments from several individuals who simply say “keep up the good work.” There have been others who stated that a particular post or blog helped them cope or understand psoriasis better. You may not receive accolades for your work every day, but please believe: People are watching.
Alisha Bridges has battled with severe psoriasis for over 20 years and is the face behind Being Me in My Own Skin, a blog which highlights her life with psoriasis. Her goals are to create empathy and compassion for those who are least understood, through transparency of self, patient advocacy, and healthcare. She is currently a post-bach student at Georgia State University pursuing a career as a Physician's Assistance—her passions are dermatology and sexual health. Alisha also shares her passion as a Social Ambassador of the Psoriasis HealthCentral Facebook page where she shares timely tips, stories and insights on living with psoriasis. You can also find Alisha on Twitter.