4 Reasons and 4 Ways to Share Your Story of Living with Psoriasis

Patient Expert
View as:|
1 of 10

Shame, stigma, fear, rejection and embarrassment... Those are five reasons why some individuals living with psoriasis are apprehensive to share their story. However, those feelings of disgrace are of no value to the story of your life. There are many benefits to sharing your story and inspiring ways to do so. Check out four reasons and four ways to share your story of living with psoriasis.


You can influence research

Research needs your voice. What’s important to you? What challenges have you encountered due to your condition? What are your treatment frustrations? These are important questions which need the input of psoriasis champions like you to help influence the direction of research. The medical community must hear real stories from people living with the condition to assist in providing adequate support and sufficient care for the psoriasis community.


Psoriasis research initiatives to check out

There are several ways you can become involved with research. One way is by joining a clinical trial in your area. Another way is to join the National Psoriasis Foundation (NPF) Corrona registry, an observational data base which captures information from patients on the effectiveness of their treatments, which will help to improve future medicines. Are you interested in becoming a “pscientist?” The NPF also has an initiative called Citizen Pscientist where those living with the condition can share their history with psoriasis through a series of questions and it also allows you to mix and match data with others.


Inspire others through your story

Sharing your story is a way to profess to others they are not alone in their struggles. So many of us living with psoriasis can recall a time when we walked in fear and shame of having this disease. My emotional strength increased the more I shared my story. Comments from others living with psoriasis like “Me too,” or “I felt the same way but was afraid to share...” are one of the best awards you receive when you become an advocate.


Join a psoriasis support group

The quickest way to gain access to others living with the condition by joining an online support group like TalkPsoriasis.com, which currently has over 1 million users who either have psoriasis or are family member of people living with the condition. The support groups have different forums people can converse on or you can create your own topics and receive encouragement or feedback.


Expressing yourself to doctors

Doctors are missing the mark on the emotional components psoriasis have on a person’s mental health. One of the reasons the mark is missed is because people living with the condition aren’t being honest about what they are dealing with mentally. If we continue to suppress the emotional and mental struggles of psoriasis our mental health needs will continue to be neglected.


Speak to the medical community

You can approach this in a simple way by expressing yourself to your personal doctor, but if you are up for a challenge you can relay this information in an even bigger way by becoming involved in research which includes patient advocacy. IDEOM, International Dermatology of Outcome Measures, is a group of doctors and researchers working to create a clinical trial survey which involves patient input. You can also check out the American Academy of Dermatology to see what conferences and initiatives they have available.


Help raise awareness

Earlier I discussed the importance of sharing your story others living with the disease, but it’s just as important to share it with individuals who are not living with psoriasis. Doing so will create compassion, knowledge, and a better understanding of the disease which will lead to decreasing the stigmas associated with psoriasis.


Explore the possibilities

Social media is a great place to start when you want to reach multiple people at one. Search and use the hash tags #Psoriasis, #Npfadvocacy, #Chroniclife, or #PsA to find others discussing the disease.


HealthCentral can help

Another way to share your story is to do so through the emotional storytelling of HealthCentral. HealthCentral gives individuals like you the chance to share your stories in a beautiful way. To get started, check out this form.