I'm getting a lot more personal about my health than I have before, because I want you to know why I'll never stop calling out people who make dangerous health claims, especially when they refuse to admit mistakes and instead complain that people didn't respond nicely enough. /1

A few fun facts to start out:

1. I taught 5-10 spinning classes/week for 8 years. (The most intense form of riding a bike)

2. I taught weights-based classes for years, too, along with yoga.

3. I've always been obsessed with vegetables and eating healthily. /2

I was born significantly premature, and spent my first months of life in the NICU, on a ventilator. Babies born today have better treatment options, but this was 40 years ago. Result of all that time on the vent: My lungs never developed fully. Bikes and salads can't fix that. /3

All thru childhood, I had one infection after another. At 8, I had to be hospitalized for 2 weeks and nearly died from a bone infection caused by simple strep bacteria. (I was also told that I was faking the pain, whole other story, but I learned early to distrust the system.) /4

I got sick so often, my parents worried I'd gotten HIV from blood transfusions in the NICU. (It was the 80s. That was possible.) I hadn't, but I kept getting sick. Scarlet fever in high school (also caused by strep, but rare these days because of meds) was a big clue... /5

... that my immune system wasn't normal. And after testing, we learned it's not. I'm permanently immunodeficient. There is no cure, only imperfect treatments. Diet and exercise don't make a difference.

I will always be at a high risk of catching and dying from everything. /6

In adolescence, all these unexplained things popped up: GI issues, cluster headaches and migraines, chronic insomnia, excessive bruising, restless legs syndrome, constant injuries. Many tests, no answers. I was figure skating competitively and dancing seriously at this time. /7

When you don't get answers, you just do your best to live your life. And I've always done that, accumulating more mystery symptoms at every turn. In my 20s: more injuries, weird new neuro symptoms no one could explain (tingling hands and feet, worsening proprioception). /8

In my 30s: chronic dizziness and nausea. I was tentatively diagnosed with MS, but then went gluten-free, and those symptoms went away. (Not prescribing GF as an MS treatment! Talk to your doctor, folks. I am not one.) Eventually, after many more tests, I got a new diagnosis. /9

Ehlers-Danlos Syndrome (EDS), a genetic connective tissue that's now being recognized as fairly common. It tends to come with POTS (explains dizziness, nausea, tachycardia) and mast cell activation syndrome (MCAS, explains allergy-type symptoms). Feel free to look 'em up. /10

After we knew, we found EDS all over my dad's family. It explains so much for so many of us. But it's not curable or even really treatable, and it comes with more rapid onset of arthritis, and more bodily pain and injuries. In normal times, I'm always in physical therapy. /11

My best chance for having good quality of life for as long as possible is to stay as active as I can be, which is tough when gyms aren't safe and when tourists can't stay away from local trails. (Remember: immunodeficient.) POTS also makes exercising in heat extra tough. /12

But even w/ my long dedication to healthy diet and exercise (not just casual exercise, but way more intense stuff than my lifelong vent-caused asthma would suggest is possible), I'm still losing mobility and ability rapidly. It was my big early retirement motivation. /13

I'm now in legit pain most days, and can't always hike or bike. I have to use a rollator (walker) when I go to warm-weather events so I can sit at a moment's notice and not faint. I still mostly pass as able-bodied, but I'm not. And I haven't even mentioned the dislocations! /14

I can no longer twist my torso bc ribs dislocate. I can dislocate a finger opening a jar. I can only have micro dogs because real dogs would dislocate my shoulders and elbows easily. I dislocated my hip on a work trip and have a torn labrum that's inoperable bc of the EDS. /15

I don't know what my future looks like, but there's no happy ending. I can keep all my risk factors as low as possible (my cholesterol is 130, my BP is 100/60, my heart and blood vessels have no plaque per echocardiogram), but all these other processes will keep happening. /16

I'm proof that you can do everything right and still be sick, and my story is really not that unusual. My particulars might be unique, but 1/3 of Americans are disabled during their lifetimes. That's super common. That could easily be you one day. /17

Exercise and healthy diet are important for everyone, and especially for me if I want to retain my mobility. But those are long-term things.

In the short-term, my constant fear is the respiratory and vascular virus whose spread is speeding up, not slowing down. /18

I'm not old or diabetic, I don't have heart disease, but the virus terrifies me because my immune system provides zero defense, my lungs are already trashed and can't handle more damage (did I mention I had pneumonia for a *year* in college?) and I have vascular stuff, too. /19

But people are out here saying masks harm you (not true), that herd immunity is achievable (false, see Sweden), that it's fine to reopen if we wear masks (false, masks don't provide full protection). /20

Sweden: https://www.nytimes.com/2020/07/07/business/sweden-economy-coronavirus.html

Masks: https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/cloth-face-cover-guidance.html

Or people say "Sure, masks are great, but first we need to talk about diet and exercise, because statistically, neglecting those are more dangerous," which seems like a fine argument on its face.

Here's why it's not.

1) It makes equivalent things that aren't equivalent. /21

It's like if your house is on fire, and you say you need water to put it out, and someone says, "yeah, but statistically your house is more likely to be destroyed by termites, so let's focus on preventing those."

We're in a public health emergency. Focus on the fire. /22

2) It reinforces the false notion that if people get sick and die, it's their fault. They didn't try hard enough to be healthy. They didn't take personal responsibility. I've shared my health history here to dispel that.

3) It's ableist. Not everyone is able to ride a bike. /23

4) It's anti-poor people. Google food deserts. Not everyone can afford or access salads and fresh vegetables. Healthy diets are something this country reserves for the well-off.

5) It's racist. Yes, racist. Black and brown people are far more likely to get the virus and die. /24

Talking statistical likelihood is pretending we're all at equal risk when we're not. It invalidates the fear of high risk people, whether from underlying conditions or huge racial disparities in access to quality care.

Don't "yeah but" or "both sides" the virus. Address it. /end

P.S. Shoutout to the wonderful @Done_by_Forty for the termite analogy.

https://twitter.com/done_by_forty/status/1280574514410123266?s=21 https://twitter.com/done_by_forty/status/1280574514410123266