Well, it appears I’ve saved the best for last. And if not the best, perhaps the most conflicted. While tTrust in myself is complicated but knowable, trust in providers is fairly straightforward, and the tension between patients and insurance is specific to the constraints of the industry.

Our feelings about the drug and device companies are more convoluted. To paraphrase a silly movie, it’s the duality of man, that Jungian thing, exemplified by Matthew Modine in Full Metal Jacket with a peace sign on one side of his helmet and “Born to Die” on the other.

For patients, the technology of the drugs and devices we depend on is a scientific marvel, and we are grateful for the chance to use them to improve and extend our lives. On the other hand, we feel like the companies that develop and sell these miracles of technology dangle them in front of us then yank them away through price hikes based on nothing more than what the insurance companies and the Federal government (through Medicaid/Medicare) will pay for it.

This week I want to talk about trust between patients and the healthcare industry, specifically insurance companies and drug/device makers. This is a delicate subject. It’s not a secret that there is tension between patients and these companies. We need both of these industries to survive but, at the heart of it, patients just don’t feel that they have our best interests at heart. Their primary goal is to make money. I get that. And they are very successful at it. But we patients feel like it’s often at our expense. In order for patients to receive the best care, this has to change.

Formative years are called that for a reason. My formative years were chock full of medical experiences. When I was young, trust was unconscious. I did not think about the role that providers played. That was my parents’ job. I was just supposed to follow directions and do my exercises and go to my appointments. The meningitis and resulting seizures, bumping into walls, and paralysis eventually passed, and later I would realize that my acute illness had gone unusually well. I had come out of it as normal as was possible. The doctors, nurses, and therapists, both occupational and physical, had been wonderful. They were my friends and worked almost as hard as I did to make me healthy. That’s all I knew. That’s all I had to know.

I have written before about my lack of trust in my own body. My body decided it was not going to work like everybody else’s before I was six, and it stopped doing a lot of the basics beyond the autonomic functions like breathing. For a long time, it couldn’t walk, it couldn’t run, and it couldn’t swim. It couldn’t write or use the bathroom without help or cut food to feed itself. Eventually, with the help of my family, we beat it back into working order (kind of like when you kick the vending machine enough times that it finally gives up the bag of M&Ms), but it left an indelible mark.

This blog post was originally published on May 22, 2018.

One of my friends recently asked me how best to manage a chronic condition.

During the transition between noncompliance and acceptance, I clearly remember that all I wanted was to get to the point where I could relegate my regimen to a tiny corner of my life. I would be “normal” and it would become so easy and routine that the whole thing would take up no more of my attention every day than, say, brushing my teeth. I’m here to tell you it’s possible!

Well, sometimes.

Look at anyone’s list of how to improve healthcare, and patient safety will always be mentioned. From overarching issues like overtreatment, undertreatment, and misdiagnoses, to the more granular ones like pharmaceutical mislabeling, hand-washing protocols, and illnesses contracted in the hospital, there are many issues that cause both harm to the patient and unnecessary costs because of delayed or ineffective treatment.

I have a few of these medical missteps in my own healthcare history.

When I was young, I was a bit of a drama queen (assisted by the drug cocktail I had to take to recover from meningitis). I remember crying at the drop of a hat, and my dad sometimes referred to me as “Sarah Heartburn”, a sarcastic reference to French actress Sarah Bernhardt, dubbed the "the queen of the pose and the princess of the gesture". As I got older and accumulated more conditions, I got to a point where I could suppress most of my emotions, for better or worse. Except for that one thing.

I am a catastrophizer. In my head, I can spin a minor issue into the end of the world.

No, not those crutches. The bones I have broken are all arm/hand related, so I have never had to use those kinds of crutches. I’m talking about psychological crutches. You know – the tools we think will make our goals, chores, or treatment tasks easier, but ultimately end up expensive corner-cutting measures that only interfere with the sustainability and progress toward the goal.

Most crutches are harmless. I used an auto injector to give insulin shots for a long time because I was too much of a weenie to press the plunger myself. And many people (ahem, you know who you are) take more vitamin supplements than they need because they think it helps them stay healthy.

But there is a point at which some of those crutches cross a line and actually start causing harm.

By now, many of us are familiar with Simone Biles’ withdrawal from most of her Olympic events due to her mental health. It feels like we have come full circle with her coming back to win bronze in beam. She said that winning that medal meant more to her than all her previous golds because of what she had to overcome to win it. I believe it.

It was interesting to watch the coverage. Immediately, the media onslaught commenced, but different from years past, there was much more lauding her for her bravery than condemnation for perceived weakness. But to me, it didn’t quite ring true. It felt scripted, like the networks and media outlets had all called meetings and laid out in no uncertain terms how commentators and reporters were to handle it. And most everyone did end up saying the “right thing”. But a change in outlook regarding a topic as sensitive and stigmatized as mental health isn’t so easy to change, especially in sports, and especially especially in American sports, where anything but a #1 spot isn’t really a reason to celebrate. I’m not saying that the public shift isn’t great. It is. It’s a huge step in the right direction. But if you are paying attention, you can still feel the unspoken judgment.

They gave it away with one little word: just. Awful, insidious adverb (at least in this context). Almost as bad as “should”.

Well, 13, actually. Shortly after I started my hiatus, I got my thirteenth diagnosis – plantar fasciitis, a painful inflammation of the ligament that connects your heel to your toes. I’m not sure it’s chronic. It might just be recurring. But it stems in part from a large bone spur, so unless I have surgery, it is likely to return. (The other parts are pronation and flat feet, which got a lot worse during the pandemic because I wore shoes a lot less.)

I had already self-diagnosed by the time I went to the doctor. When I got back to exercising in February, I started having pain in a very localized, half-inch area on the inside of my heel. I ignored it until it became more than a nuisance. Then I called for an appointment to confirm what I suspected and start a proper course of treatment. It was not lost on me that after being paralyzed and dealing with severe peripheral neuropathy (diabetic nerve pain) when I was 20, this was the third hit to my mobility.