What keeps you from telling your story?

Even the most mundane of stories help us paint a more complete picture of life with diabetes

The question “What keeps you from telling your story?” was asked recently in the diabetes online community. And it got me thinking.

About the same time a call went out asking for personal experiences having to do diabetes-related eye conditions.

I almost didn’t respond.

You see, I did experience a weird episode with my vision since being diagnosed. But it literally cleared up overnight. And there’s no indication that any permanent damage was done in any of my annual eye exams since.

So I don’t think of it as a complication as much as an incident.

One evening, after a particularly stressful day at work, my sight was disrupted with what looked like black paint dripping. My eyeball looked normal but what I was seeing wasn’t normal. I called the advice nurse and by the time I saw the ophthalmologist the following morning the streaks were all gone and my eyeballs were back to normal.

My story doesn’t have any drama or tension. The advice nurse and ophthalmologist did their jobs. I had insurance which covered the cost of the short notice exam by a specialist. I lived in a metro area where the specialist I needed was close by. My sight went back to normal.  Everything worked out okay.

So I questioned whether to share my story. Would my story be useful? Would it help others understand anything about eye health and diabetes?

But then it occurred to me: representation matters.

And representation cuts both ways.

We need to hear about the full range of people’s diabetes experiences. Not just the dramatic, but also the mundane.

We need to see the good along with the bad.

We need to know that the medical system can work as we expect it to and insurance will cover the cost.

We need to know all that is possible. Not just the scary or heartbreaking. Full representation matters.

Why patient advocates need to produce for other people’s platforms

Patient advocates can keep the one story from becoming the only story by producing materials for other people’s platforms.

Once again I’m cutting straight to the chase. The reason individual patient advocates need to produce for other people’s platforms is, in one word,  “reach.”

A few months back I was interviewed for an article about people with type 2 diabetes who use insulin. At the end of it the interviewer actually said to me, “Huh, it’s more nuanced than I thought.” In my head I said to myself, “Yeah, it’s not just needles are scary and insulin equals failure.” Even though I kept my snark to myself, I was shocked that an experienced health journalist seemed to have such a narrow understanding of life with diabetes. 

It made me realize (once again) how important amplifying all of our voices is in telling the complex and more-complete story of life with diabetes. Other people (both inside and outside of the diabetes community) have no way of knowing what life with diabetes is really like for you if they never have the opportunity to hear from you. Producing material for other people’s platforms gives people a chance to hear from you.

But don’t just blindly produce material for any other platform. Consider the potential impact in your decision.

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Why patient advocates need to build their own platforms

Virginia Woolf spoke of A Room of One’s Own. I’m suggesting A Blog of One’s Own. Or a podcast. Or a video channel. Or a website.

I’m cutting straight to the chase. The reason individual patient advocates need to build their own platforms, in one word, is “control.”

A platform of One’s own

Virginia Woolf spoke of A Room of One’s Own. I’m suggesting A Blog of One’s Own. Or a podcast. Or a video channel. Or a website.

Somewhere you can publish your thoughts and observations without interference.

I’m not talking about a platform where someone else makes the rules. Where someone else sets the editorial boundaries and enforces them.

I’m not talking about a platform where you have to buy ads to get in front of an audience.

I’m not talking about a platform where they lure you in with the promise of easy setup and site management, until they change how their platform works.

I’m not talking about a platform where, somewhere buried deep in their terms & agreements, they say they own all the content shared on their platform.

I’m not talking about a platform where, if the shareholders or investors don’t see a profit or decide they no longer want to be in the platform business, they can simply shut it down.

I’m talking about your own corner of the online universe.

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Be a contributor, not a guru

“You don’t have to be a guru, you can be a contributor…” I had never heard of Denise Duffield-Thomas, but what she said resonated with me as wisdom for patient advocates.

I don’t even remember how this item came into my social media feed. I had never heard of Denise Duffield-Thomas, but what she said resonated with me as wisdom for patient advocates.

“You don’t have to be a guru, you can be a contributor. If you really care about a topic, be a contributor. You don’t have to know everything.”

Too often patients (and their caregivers) censor themselves.

They don’t feel qualified. After all most patients don’t have medical degrees or some other kind of formal credential. So, what?

They worry that their knowledge is based “only” on their personal experience. Can the one speak for the many? Guess what, most medical professionals don’t have any personal experience with diabetes, or any other chronic illness or disease, and yet they generalize.

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Sitting at the advocacy table

A recent talk by Michelle Obama got me thinking about diabetes advocacy

Recently, after reading about a talk Michelle Obama gave in Indianapolis, I got to thinking about patient advocacy, particularly about patient advocates having a seat at the table where healthcare decisions are made.

We know that there are many tables in the world where decisions are being made that will have an impact on our health and lives. Some of those tables are in government settings. Others are in medical settings. Still others are in corporate settings.

Whether it’s at a hearing, conference, industrial meeting, clinical trial, or in a doctor’s office. Every day people are having discussions and making decisions that will decide our fate. These discussions determine what resources, if any, are put to finding cures. These decisions determine the affordability and availability of treatments and care.

Every one of these tables could benefit from including patient voices in the discussion. After all, we’re the ones who deal with the day-to-day reality. We’re the ones who suffer the consequences or experience the benefit.  We’re the ones who can help them figure out if there’s a market for the devices, drugs, and treatments they want to sell.

As the saying goes, #NothingAboutMeWithoutMe.

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