Every other year, the National Psoriasis Foundation provides an Award for Outstanding Volunteer Leadership. I was nominated back in 2013, but did not win. This year, I was nominated again for the 2015 volunteer conference which was held in July. I didn’t know if I would win or not - I was up against some amazing volunteers. Each of us had unique reasons to what drove us to donate our time, but the common denominator was simple; we want to help find a cure, and provide ways for people to cope until a cure is found.
As the NPF puts it volunteers are “…those who find the courage to transform the challenges and frustrations of psoriasis and psoriatic arthritis into positive action.” This year's award was presented during the conference's volunteer breakfast. A pre-recorded interview about why we volunteer, dubbed over pictures of our advocacy work, was showed to everyone at the breakfast. I listened to each of the finalists in amazement - honestly unsure of who would win because ALL of us had done amazing work. Finally it came time to make the big announcement. After a few moments of keeping the audience in gripping anticipation… The 2015 Outstanding Volunteer winner was… ME.
I felt as though I had waited my whole life for that moment, even though 4 years prior to my involvement with psoriasis advocacy, I never thought it was even a possibility. I didn’t have a speech prepared, I was prepared to speak from the heart if I won. It was a very emotional moment for me, but I finally was able to put the words together. I was just thankful that I didn’t allow this disease to ruin me and that I used what I thought was a curse to help others. I felt as though I had waited my whole life for that moment...I was just thankful that I didn't allow this disease to ruin me, and that I used what I thought was a curse to help others.
Honestly, advocacy and volunteering have changed my life. Years ago I was this timid, shameful, girl ashamed of speaking out about my disease. But now I am a strong and willing woman who not only wants to speak out about psoriasis but provide compassion for all people who may be misunderstood.
Here are 3 ways patient advocacy changed my life and will change yours too:
1. You Realize You Aren’t Alone. One of the reasons I was so afraid to speak out about having psoriasis is because I felt like I was alone, and that no one would understand what I was going through. I hid my skin at all costs, although sometimes the severity of it would not allow me to.
I remember going to my first NPF conference 4 years ago, when one of the special education teachers that taught at my old elementary school was at the event. We looked at each other shocked, not realizing that after all these years we both had psoriasis. We passed by each other in the school halls for years, and it wasn’t until almost 20 years later we realized we were fighting the same battle. He too, spoke about feeling alone. Once you get involved in patient advocacy you meet people from all over the world who are fighting the same battle, and who can support you throughout your journey.
2. It Will Help You Find Your Voice I realize everyone is at a different stage with their disease. Some people are able to speak out, while others haven’t quite yet found the courage. Whatever stage you are in your journey, connecting with a foundation that helps fund research for your disease will help you find your voice.
3. It Will Connect You One of the greatest things about being a patient advocate is I’m usually first to know about the hottest trends in the psoriasis community. I have connected with a variety of leaders and influencers, including researchers, doctors, community advocates, patients, pharmaceutical reps and many more!
I met a dermatologist in Atlanta at an NPF event who later became MY doctor, and for the first time in my entire life I am almost psoriasis free. Our relationship began to build even more and she is now a great sponsor for the Team NPF Walks we do here in Atlanta. Without being involved in patient advocacy I probably would have never met her, and if I did, the relationship probably would not be the same.
Which form of advocacy are you ready to tackle? I challenge you today to get your voice heard and speak out about your disease!
Ready to get started and share your story? Here are two great places to start:
Support Groups You might not be ready to tell the world about your struggles, but you can share your story with like-minded people who will definitely not judge you and understand exactly what you are going through.
Capitol Hill Day Almost every cause has a Capitol Hill Day. This enables volunteers from non-profit organizations to step on the grass of Capitol Hill and speak with their congressmen about why a particular cause should be supported. I’ve done 2 so far in my life! This event usually take place a few weeks before bills are voted on. It’s a great chance to get up close and personal with your state's senators and representatives to share your story and why your cause should be important to them.
Read more of Alisha's posts as a community expert on what it's like to live with psoriasis, and be sure to join Alisha during HealthCentral's #ChronicLife Twitter Takeover this August 28-29, 2015.