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.

** A brief note that this will be the last blog post for a few weeks. The PAC team is taking a well-deserved break and will be back the week starting July 19 rested, refreshed, and ready to go! See you soon**

Alzheimer’s Disease, one of the most common of over 400 types of dementia, terrifies me. I have dementia on both sides of my family, and though the majority of types of dementia are not hereditary, my emotions can’t seem to accept that.

I am not alone. In a 2016 survey out of the UK, over half of the participants who suspected they had dementia put off going for a diagnosis. Over 60% said they thought a dementia diagnosis effectively would mean the end of their lives. I don’t blame them. I can’t let myself think knowing my mental capacity was slowly but inexorably declining while my physical self remained healthy without triggering a panic attack. When I had to designate my preferences should I be mentally, but not physically, incapacitated, I cried through the whole section. It was traumatic.

I am a planner. I check menus before going to restaurants. I investigate parking options for every new place before I go. I need to know what to expect and what to bring to accommodate my condition. I’m not pathological about it – new technology and medication affords me a measure of flexibility -- but I was medically raised in an environment where rigid routine was the healthiest path. Which I didn’t follow, of course, but the lessons were learned.

It’s a natural state of mind for chronic and autoimmune patients. There is such a high level of uncertainty to many of our conditions that planning is a way to help us wrest a little bit of control back from conditions that afford us very little.

I know how this is going to make me sound, but I have a confession to make. The gratitude movement drives me nuts. For years, we have been told that taking time to list the things we are grateful for will do wonders for our mental health. Um, what?

Make no mistake. I am grateful for a lot of things. Mostly people, actually. But that’s already part of my psyche. I express it when appropriate, but realigning my life to display an “attitude of gratitude” feels fake and insincere. For two reasons.