The Biggest Misunderstandings About Health Advocacy

Choosing to become an advocate means sharing a health journey. To educate others, advocates share personal details about their health. They become vulnerable to help others on similar journeys.

Unfortunately, misconceptions about the role and purpose of advocacy abound. Friends, loved ones, and even strangers often make insensitive comments that show their lack of understanding.

We wanted to learn more about the misconceptions about health advocacy that our Health Leaders have encountered. So, we asked the Social Health Network Facebook community, “What is something people misunderstand about health advocacy?”

Here are the top misconceptions the community deals with.

Advocacy is easy-peasy

One misconception of advocacy is that it is easy. Becoming a successful advocate requires dedication and hard work. It takes years to build a thriving network. Advocates invest countless hours working to connect with their audience.

Advocacy also happens while living with a chronic health condition. Flares and fatigue can slow down the work. It does not happen overnight!

“They believe it is easy.” – Racquel H. Dozier

“That it’s not hard to accomplish.” – Scott Matheny

It generates a lot of income

Some believe that advocates make a lot of money from advocacy work. An advocate’s condition often removes them from the workforce, so any income is welcome when living with a chronic illness. But advocacy is not high paying.

Advocates do the work because they believe in raising awareness, not for the money. Advocacy fulfills a sense of purpose with chronic illness. It is also flexible and able to be scheduled around doctor appointments and bad days.

“Either they believe it’s lucrative, or feel it’s normal that we do everything for free.” – Annie-Danielle Grenier

“That we are taking advantage of our health condition for personal gain.” – Erica Nicole Carrasco

Advocates are attention-seeking

Another misconception of advocacy work is that it is self-serving. Advocates hear that they are using their disease for attention.

Being an advocate means talking about a chronic illness – a lot! Advocates use their experience to fight false impressions about their disease. Advocacy is not telling a story for pity or sympathy, but to help others learn. They do not want others with the disease to feel as alone as they did.

“Other people think we’re just looking for pity or attention.” – Kerry Wong

“That we never ‘shut up’”! – Lorene Alba

“That we do it for attention / that it’s glamorous.” – Natalie Hayden

“That we are just whiners, and if our health problems make us high risk, we should ‘just stay home.’” – Andrea Jensen

Advocacy is not legitimate work

Advocates often receive criticism about their work. People may suggest it is not a real job or title. Some even interpret advocacy efforts as trouble-making. They do not understand why advocates need to do what they do.

Advocates invest a lot of themselves in their work. They raise their voices to help others access accurate diagnoses and care.

“That advocacy is not a title.” – Randy Madara

“They say we are ‘troublemakers.’” – Ellen Reed

Thank you

We appreciate everyone who engaged with this prompt. Please continue the conversation below! What other misconceptions about health advocacy have you encountered?