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.

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.

Continue reading “Be a contributor, not a guru”

Feeling the ripples of change

Each time I share my views as a person living with diabetes it’s as if I tossed a small stone into a pond, generating ripples of change.

Looking back at 2015, one word comes to mind when I think of my life with diabetes: advocate.

Google Search: define advocate
Google Search: define advocate

I thought about and discussed advocacy a lot during this past year. Who is a diabetes patient advocate? The patient him or herself? Anyone who cares about people living with diabetes? Where does advocacy take place? In the doctor’s office? On Capital Hill? Which issue is most important to advocate for? Easy and affordable access to treatments and medical devices? A cure?

The answer to all of these questions is “Yes.”

Being an advocate and engaging in advocacy is all of these things, and so much more. Each conversation has the potential to change a person’s view of life with diabetes. Each doctor’s visit has the potential to improve the treatment that the next patient receives, and the next, and the next… Each letter written has the potential to influence the work of policymakers.

It’s as if every time a person speaks up for the rights and needs of people living with diabetes a stone is tossed into a pond, generating a ripple of change.

According to the CDC there are more than 29 million people living with diabetes in the US alone. Imagine if each of us tossed a single stone into that pond.

Today we ask Congress to hold a hearing on #‪diabetes‬

Please let your Representatives in Washington know how #diabetes affects us all. #hearingdiabetesvoices

Please let your Representatives in Washington know how #diabetes affects us all.

The American Diabetes Association says:

  • Nearly 30 million Americans living with diabetes and 86 million more at risk of developing it.
  • The total estimated cost of diagnosed diabetes in 2012 is $245 billion, including $176 billion in direct medical costs and $69 billion in reduced productivity.

And ask your Rep to help. How? Hold a hearing on #diabetes and address these questions: