Cindy on Bus 4Like our contributor Sarah Greene, DC resident Cindy Throop was moved by Paulo Freire’s book, Pedagogy of the Oppressed. “The patient revolution must come from patients,” Cindy says. “We can educate and inform patients, but ultimately only patients can speak for themselves.” Here is her personal story of participatory medicine in action in her own life, years before she heard the term.

Several years ago, after dealing with glasses and contact lenses for more than 20 years, I decided to have vision correction surgery. I went to the University of Michigan Kellogg Eye Center, where I was confident I would get the best care possible. After committing two thousand dollars to my health savings account (HSA) to pay for a good part of the surgery, I made an appointment and went in for an incredibly comprehensive eye exam.    

For the exam, they even used the ‘extra strong’ pupil dilating liquid on my eyes. I was actually pretty mad the next day, when my pupils were still dilated! But more seriously, the coolest thing about the eye exam was that I got to see full-color topographic maps of my eyes. The doctor showed me the map and explained the mild irregularities he was concerned about in each eye. As it turns out, I have a very mild form of keratoconus in both eyes.

If the keratoconus had been more severe, I would not have been a candidate for corrective surgery. He proceeded to tell me that in his own clinical judgment, he would not recommend the surgery. On the other hand, if I decided I wanted the surgery, he would be willing to perform it. The doctor wanted to make sure I understood that I was in a slightly higher risk category than people with no sign of the condition.

I asked him about the complications and if they were to happen, what could be done to address them after-the-fact. He was very direct and told me that complications could lead to even worse eyesight and that the complications would simply be irreversible. (Even with the assistance of glasses or contacts, I would never see clearly again.) I went home, feeling disappointed. I did some research on the internet. I sent him an email asking a follow-up question. He responded with additional information.

Ultimately, I decided not to have the surgery. I did my best to spend the $2K I had put in my HSA, which was pretty challenging given the restrictions on how it can be spent. I ended up with four new pairs of eyeglasses (which explains why I have them in multiple colors).

But more important than the financial loss is that I was given all of the facts and encouraged to make my own decision. After all, I would have been the one to live the rest of my life with the negative consequences, should there have been any.

In the years since, I have seen the price of the surgery go down. I’ve seen financing plans make it even more ‘affordable.’ I’ve seen special medical centers built for the sole purpose of performing this kind of surgery. I am often haunted by the following questions: What would have happened if I had gone to a facility that was driven more by profit than academic expertise? Would they have told me about the keratoconus? If so, would they have explained the increased risk at all, or would they have downplayed it?

This is why participatory medicine is so important. It has the potential to directly affect your health, yet it’s strangely elusive. Unfortunately, it’s not something you can always count on receiving. You experience it if and when you are fortunate enough to interact with clinicians who believe in it. It is relatively easy to know when you are being informed and included in the decision-making process. How do you know when you’re not?
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Related material:

Cindy cited a post here in May, “Participatory Medicine as Revolution! Think Critically! Communicate!”, contributed by Sarah Greene, Managing Editor of the Journal of Participatory Medicine.

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