4 Ways to Open up to Others About Your Disease

Patient Expert
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When you have psoriasis and are ashamed of it, you become really creative with ways to hide your disease and the how it affects you mentally. Many people are afraid to show their disease, let alone tell others they have it. I have heard different reasons for the fear to reveal, which include possible job discrimination, stigma, misconceptions, fear of rejection, a lack of compassion and much more.

It can be tough to open up to those around you. I remember going to college and being overwhelmed with the fact I would have to tell someone I didn’t know about my disease. I would have anxiety attacks just thinking about it. Although opening up about your condition can seem scary, there are ways to successfully open up to people. Here are 5 ways to open up to others about your disease:

Brochures and Pamphlets

If you aren’t at the point with your disease where you feel comfortable enough to explain it verbally, an alternate option is available. The National Psoriasis Foundation has brochures and pamphlets you can download for free and print out. You can also request hard copies of any of the material directly from the foundation. The topics include:

·  Overview: Psoriasis & Psoriatic Arthritis

· Systemic and Topical Treatments

· Parent’s Guide

· Stories for Youth

· Caregiver Handouts

· School Action Packages that include information for the classroom

The NPF also has a Spanish option for select materials. You can leave these materials in the breakroom at work, give it to a roommate, or a friend. You can also visit your dermatologist who should also have brochures and pamphlets in the office for you to take.

Social Media and Blogging

5 years ago when I started blogging it was just a safety net.

I felt as though I could express myself, tell people what it was like living with this disease, shut the computer and never have to worry about what someone was REALLY thinking.

I started off posting in psoriasis support groups where I connected with others just like me; This gave me strength, and inspiration. I then took my story to Facebook where I would share small antidotes with mainly family and friends. Surprised by the positive feedback and love I received from my Facebook friends, I decided to go even further by starting a blog.

I incorporate words of expression and video to help share strength with others and what it’s like to live with psoriasis. It also amazed me how many people I walked by everyday with the disease who were also living in silence. So many people started reaching out to me giving testimonies of their own stories after I revealed mine.

According to the research group Pew Internet, 75 percent of adults use social media. Here are some photos of positive moments I’ve had from utilizing social media:

Confiding in Those You Trust

Famous Author Wendy Mass once said “Be kind, for everyone you meet is fighting a battle you know nothing about.” You will be surprised how you might relate to people even if it’s not the same disease. A lot of us with chronic illness or diseases actually deal with the same mental and social issues. When I began confiding in friends and family who I really trusted, they had no idea of the battle I was facing. Once they learned of it they became more empathic to my situation.

I also learned about my friends’ secret battles. Since I felt comfortable enough to share with them, in turn they shared with me. It’s also good to find others with the same disease, as they will understand exactly what you are dealing with. The NPF has a One-to-One Mentor program which will help connect you with someone who has psoriasis.

Counseling

The insecurities and depression you may encounter due to psoriasis is most definitely skin deep, but counselors and therapists are here to help. I’ve never been to counseling specifically for psoriasis, but I did decide to go when I encountered a separation from my ex-husband.  I was emotionally damaged, but many of us with psoriasis know too well of the emotional rollercoaster this disease will also take you on. Sometimes you feel like you can take on the world while other times it feels as though the world is taking you.

In any situation, there are people here to help you through and have dedicated their lives to helping the emotional and mental health of others. In addition to help they are also required by law to keep your conversations confidential. This is a safe and secure way to get your story out, learn about yourself, and find ways to cope with your disease.