5 things I tell people who think they can’t be advocates

It always feels good when another patient tells me how much they appreciate my advocacy work. Often the next thing they say is, “I could never do what you do.” But getting involved is easy. Here’s what I tell people who think they can’t be advocates:

1. You can be an advocate.
Anyone can be an advocate. You’ve likely heard before that you’re an expert in your own experience, or in living with your health condition. Those are both important truths, but you also bring other kinds of expertise to the table. Maybe you’re a great public speaker or a master organizer. Maybe you know everyone in town. Whatever you’re good at, there are opportunities to capitalize on that.

2. Your story is your most powerful tool.
Personal stories help build connections and understanding. Your story is your experience, and that’s something no one can argue with.

3. Now is the time.
You don’t have to wait for remission or recovery. There are plenty of “armchair advocacy” opportunities you can pursue without even getting out of bed. Social media can be a powerful tool!

And there are big changes happening in the way that health care in the United States is delivered and paid for. If you want to improve patient experiences or ensure people have affordable access to the care they need, this is the time to act.

4. It’ll make you feel better.
Ongoing health issues can be disempowering and lonely. Advocacy is an opportunity to do something powerful with your experiences, and to connect with a community of patient advocates.

5. You do you.
Your advocacy doesn’t have to look like anyone else’s. Consider what you want to give, what you have to offer and what you’re hoping to get from the experience. Are you hoping to influence lawmakers, physicians, educators, other patients? Is there a specific change you’d like to drive? Whatever your goals and abilities, there are advocacy opportunities to match.

Medically, the past year has been particularly difficult for me, with an increase in symptoms, multiple medication changes, more aggressive treatments and a couple of hospital stays. But I’ve also had some amazing opportunities for advocacy. While my illness can make me feel weak and alone, these make me feel strong, proud and empowered. It’s been a good year.


ABOUT MEDICINE X | CITIZEN: To be a #medx citizen is to have a voice, no matter who you are. CITIZEN aims to be a guide to the people and action in the Medicine X community that are shaping the evolving health care conversation. Entries in this series are not an endorsement of the people or actions featured.

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