Wednesday, June 26, 2019

Get involved with your chronic disease community


Not long ago, I read a quote from Gloria Steinem that helped me realize where I am in this chronic disease journey. “The final stage of healing is using what happens to you to help other people.” While I still have pain and fatigue, both symptoms of my psoriatic disease, I rarely feel self-pity or mourn for the life that I could have had. In many ways, my life is better because of my journey.

When my symptoms of psoriasis and psoriatic arthritis started at 23 years old, I felt my share of self-pity. I was sad and angry that I couldn’t do things other people my age were doing. My life was not fun in any way. Not only was it a struggle for me to work but it was a struggle for me to put my clothes on and brush my teeth and hair. It was a struggle for me to walk outside and get into my car. Honestly, I didn’t know how long I would be able to keep up with this struggle. I worried that I would have to leave my job, and then what would I do? These feelings of self-pity and anger probably continued, at least to some degree, until my daughter was born in 2002. After she was born, I was too busy and too tired to feel sorry for myself.

Throughout Nora’s childhood, I figured out how to manage my own symptoms with the active lifestyle requirements of a little girl. My medicine was working well for me and I found that I was able to do what I needed to do with a few accommodations. (If you thought your manager didn’t understand your necessary ADA accommodations, try negotiating them with a toddler!) Then she became a teenager. And then started driving. I found that I had time on my hands that I had not had in many years. That’s when I decided that it was time to give back and help someone who is new in their own chronic disease journey.

Everyone with psoriasis knows about the National Psoriasis Foundation (NPF), but since I hadn’t had much time to think about my own issues, I had not really been involved with them. It turns out, they are a very active group! My husband and I drove up to Washington D.C. to participate in a walk with the NPF. Everyone I met said, “are you going to the National Volunteer Conference next year?”  At that point, I was hardly a volunteer. I raised money for our walk in D.C. (I was second top individual fundraiser and got a certificate that says so!) How did that qualify me as a volunteer? But I thought about it. I knew I wanted to get more involved in volunteer work. And then I got a scholarship to attend. The moment I arrived at the conference hotel in Chicago, I knew I was with my people. The sessions were outstanding. People shared their volunteer experiences. I was energized to make a difference.

Immediately after the conference, I reached out to the volunteer coordinator and told her that I wanted to be a one to one mentor. She had me complete an application and I soon got word that I was accepted. A small group of us participated in an online training and I was off and running. The more I got involved, the more opportunities came to me. Through my mentor portal, I learned about a couple of different patient advisory boards, which I was able to travel to. I applied for and was accepted as a Psoriatic Disease Research Ambassador. Most exciting for me is finding opportunities to share my story.

Are you looking for ways to get involved and give back to your community? There are so many ways that you can do it and your path to involvement does not have to look like mine. Maybe you aren’t the extrovert that I am and just want to work behind the scenes. I don’t know of a single non-profit organization that does not need volunteers. Even if you’re working with a national non-profit there will likely be opportunities to get involved at a local level.

If you are comfortable speaking to people and telling your story, I encourage you to do that. Whether you have psoriatic disease or have another battle that you struggle with, awareness is the key to creating normalcy. On two separate occasions, I have shared a speech with my colleagues to prepare myself for an upcoming public speaking event. Both times, my reward was so much greater than the practice I received. I was able to finish those talks knowing that I had taught my co-workers something, both about myself and about my disease. It was also obvious that I had gained their compassion and understanding.

My skills and interests are in sharing my story and talking with other people about their stories, but I promise you that this is not a requirement for helping other people. If you have reached that final stage of healing, or if you know you’re ready to be in that final stage, I encourage you to get involved. Find out just how good it feels to help someone else.

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