Maybe you’re an advocate looking for new ways to become involved. Or you want to become an advocate but have no idea how to get started. Maybe you don’t have a disease yourself but want to advocate on behalf of people you care about: friends, family, co-workers, children. Whatever your situation, here’s what you can do to support the chronic disease community:
Get to know your government
Research and quality treatments start with the government, which is why all great advocates reach out to their congressmen. The people in Congress decide how taxpayer funds are allocated, and it’s up to us to inform our senators and representatives as to why our cause is important and needs financial backing.
Most organizations for chronic illnesses have a Capitol Hill Day. This is when people within the disease community go to Washington, D.C., and have the opportunity to speak with members of Congress from their state to request they sign certain bills or support certain laws. If you can’t make it to D.C. you can contact your representative via email, phone, or social media. Some chronic-illness organizations have email templates that you can download and personalize. Check with your organization to verify if these templates or other resources are available.
Brooke A., a patient advocate for a variety of diseases, gave the following advice during a Facebook interview: “Our health care is woven into our government through funding for research, insurance lobbies, coverage, and care. In order to make sure your condition has a voice for budgeting and bills affecting health care, it’s important that patients advocate. You don't need to fall in a certain place on the political spectrum. You just have to be brave enough to use your voice and tell your story.”
Share your story
Psoriasis advocate Vickie Wilkerson encourages individuals to be themselves: “Be honest and be real about your experience. People will relate to you more when they know you’re speaking from the heart.”
Great advocates share their story—with co-workers, family, or just others living with their disease. You might not be comfortable enough to announce it to the entire world on social media but perhaps you could share it in a support group for people living with your disease. There is something you can do no matter what your comfort level is with revealing your private life.
“No one can can tell your story like you. You’ve lived it: the ups, the downs, the fears, the triumphs. Don’t assume the person you’re telling your story to has heard it all before. Every story is different,” says psoriasis advocate Jaime Lyn Moy. It may feel awkward at first but it becomes easier each time you do it.
Share on social media
Great advocates don’t only tell their own stories, they tell the stories of others in their disease community. Make an effort to share blogs, tweets, videos, and memes on your social media platforms. Other people may have the same disease you do, but everyone’s experience is different.
Also, sharing other people’s stories will most likely get your story shared, which expands your reach. “You may not agree with everyone you encounter, but it is important to listen and understand where each patient is coming from. Different perspectives will only enhance your own story and make you a better advocate,” says Jaime.
Help newly diagnosed patients
Jaime reminds advocates to “pay it forward” by becoming a mentor to those living with the same chronic illness. Remember the first time you heard your diagnosis? How did you feel? Were you scared or ready to take on the world? Great advocates use their past experiences to help others. “Spread awareness and get involved. Even if you only have a few minutes to spare, the time you give could mean a lifetime of hope to someone else,” says Jaime.
See more helpful articles:
Patient Advocacy: A Growing Field for Patients to Benefit From
What is Migraine Advocacy?