The Arthritis Advocacy Iceberg

The dictionary identifies an advocate as a person who publicly recommends or promotes a policy or cause. Ideally, it's a good or relatively neutral cause rather than a bad one.

We live in an age of widespread advocacy and persuasion that shapes how we think and feel about everything from toothpaste to the perfect human diet. It’s nearly impossible to escape the reach of somebody trying to change our minds about something and someone.

It makes sense that health advocacy is happening in the midst of all of this back and forth. Health matters to everybody and makes up about 20% of the USA’s GDP.

The Advocacy that we see or participate in is just the tip of a murky amorphous iceberg sailing through the intersections of our economy, society, and cultures. It’s the end result of years of planning, pleading, and pushing by more people than we can ever know.

To get something done outsiders must know about the problem, identify  with those suffering from it, and be compelled to act.

But how do we make that happen? Well, it depends upon who we are, our resources, audience, and comfort level with revealing personal information.

A good reason

I launched my Twitter chat about 9 years ago with no idea what I was doing or specific advocacy goals in mind.

Year upon year of seeing the exact same questions and concerns posted in the  comments sections on chronic illness websites put me in a mood. Yeah, we’ll just call it a mood. Seeing patients walk my own path of fear, side effects, uncertainty, and social isolation motivated  me to turn my own experiences into something helpful to others.

It felt like getting basic information to patients about diagnosis, treatment, and navigating society with chronic illness was doable. In time, my follower count and reach grew. And people let me know I was making a difference.

Action

Most of us have specific action items that we’re sure will make things better for ourselves and other patients. I’m inclined to urge leaders to close health disparities, center Black Women in their planning, and to improve access to rheumatology for all patients in need.

The hook

Folks can’t be motivated to act without awareness and sympathy. Arthritis isn’t rare in its common forms, so it’s hard to say exactly why awareness and sympathy are so low. Or maybe arthritis’s common character is the problem? Sigh.

The main thing is that advocates must find a way to make others understand why it matters and what they can do to help.

A few important questions to ask before agreeing to participate in any advocacy event

• What is the goal of this project or event?
• How much input will patients have about what happens?
• What are the guardrails or topical limitations of the event?
• Have patients from marginalized or historically underrepresented communities been included?
• What language groups have been included?
• Will I be paid or reimbursed for my expenses?