My Incredible Shrinking World

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There are no straight lines when treating diseases, conditions or syndromes. Doctors rarely give an exact regimen to follow. Ask cancer patients how many micro and macro therapeutic decisions they are forced to make. Speak with a Type 1 Diabetic about the different insulins and glucose monitoring kits he must choose from. Ask someone suffering from endometriosis the one full-proof way they get rid of pain (then get ready for her to laugh in your face). Ask me about the four major disease-modifying drugs I’ve tried in the past decade.

Yes, four. All of which have side effects but no guarantee they will help me.

I once took a drug that put me at risk for a fatal brain infection called Progressive Multifocal Leukoencephalopathy on purpose! With my doctor’s blessing!  

I’ve taken drugs that failed me immensely after years of keeping me steady and others that never made a dent. I’ve spent tens of thousands of dollars on therapies, diets, and other complementary treatments that have betrayed me spectacularly.  

And yet, after each failure, I didn’t tell everyone in town that the local Rolfer, yoga teacher, or chiropractor was a new-age quack. I also didn’t bum-rush my neurologist’s office bitching about conspiracy theories or big pharma. I simply had an intelligent, nuanced conversation with my PA about the pros and cons of how the drug, treatment, food, plant, and/or complementary therapy was affecting my body, mind, and spirit. 

Instead, of screaming about my rights and her responsibilities, we do this crazy thing called conversation. I talk and she listens. Then we reverse it. She gives me evidence-based information (what the current scientific data is saying) as well as anecdotal information (what her individual patients are sharing with her).

Copays are exchanged. Decisions are made, and I leave her office 100% certain that I have no idea what will happen. Everything we decided may be on the chopping block in six months as more information comes to light. I simply hope for the best and plan for the worst without ever feeling the need to fly a Don’t Tread on Me freak flag. 

Which got me thinking this week about COVID vaccines and the hesitancy, confusion, and outright refusal by some healthy people to get one. When you’ve been privileged with being healthy your whole life, all questionable and uncertain healthcare decisions must be scary. Not knowing what medical course of action to take must be downright overwhelming.

But if you’ve ever told a “brave,” chronically ill person that they were your “inspiration,” that is precisely what you were complimenting them on. The ability to exist while being utterly clueless about what’s on the horizon. The ability to be resilient in a world of changing, sometimes contradictory information.

After a year and a half of being angry, I finally have some empathy and compassion for you “on-the-fence-should-I-or-shouldn’t-I” vaccine people. I’ve been wading through uncertain medical waters for so long that I forgot how scary the unknowing is.

I apologize.

I think you want a sure thing because it aligns with your belief that your wellness is due to your choices. You actually believe that you’re in complete control of your health. I hate to tell you this, but you may just be lucky. And your luck could run out tomorrow.

You see, we sick folks are quite comfortable living with uncertainty because often we do everything right and not only get sick but stay sick, anyway. We’ve learned not to take it personally when our luck runs out.

I figured out something else this week. The “we’re just going to have to live with COVID” refrain I keep hearing is code for, “you sick people are just going to have to live with COVID.” Many of the healthy, vaccinated people in my life seem surprised that I want to know if unvaccinated people will be attending a gathering I’ve been invited to. Or shocked if I request that they wait a week after their cruise before popping over. You absolutely should trust and take advantage of your vaccine. But that doesn’t change the fact that I can’t trust mine.

Being chronically ill is hard. Doing it during a pandemic is debilitating. The multiple tactics I use daily have increased logarithmically. Besides navigating brain fog, anomia, and blurred vision while thinking about every step I take, looking down at my feet, and simultaneously trying to stay alert to my surroundings, I must now also magically determine who is unvaccinated, so I can limp away from them as well. 

At least when mask mandates & social distancing protocols were in vogue, I was protected. As the vaccines rolled out, I naively thought we’d all get one and get back to normal. But just like every time I’ve been let down by an MS drug, my dream of herd immunity has been dashed along with the freedom to live my life. 

It would be fine if I could tell from a distance who puts me at risk. But it turns out you can’t determine by glancing at someone if they’re vaccinated or not. Instead, I become the asshole asking challenging questions when I want to host or attend something.

The people that understand and respect my dilemma have no problem discussing this loaded subject with me. I greatly appreciate their deference to my situation. Sadly others get defensive and annoyed that I dare to put my needs over their healthcare choices and right to privacy.

The hypocrisy astounds me. If you want all of us sick people to bear the burden of living with COVID, then you must also accept that we’re on a need-to-know basis regarding your private medical information. If you want the freedom to avoid a mask or a shot, then I require the knowledge to avoid you.

Same with business owners. If your yoga studio or chiropractic practice has unvaccinated professionals providing a service, put that on your website. Own it. Be proud of your position! If my PA is ethically required to disclose that the drug she recommends might fatally infect my white brain matter, shouldn’t my massage therapist share that he’s unvaccinated before I get on the table?

I don’t want to fight with you, but I want to steer clear of you. Not forever, just until the world becomes safe for me again. If you tell me your unvaccinated truth today, I will absolutely consider hiring you tomorrow. But if your marketing plan includes tricking sick people into using an at-risk service, you will never get a dime from me. Ever.

Tomorrow I get an infusion that knocks out my B-Cells. Tomorrow I officially go into lockdown. Again. Tomorrow my world, diminished by multiple sclerosis that got even smaller from a pandemic, gets more minuscule due to an inability to intuit other people’s healthcare decisions.

Jesus Christ, I’m exhausted.

If you need me, you know where to find me.

Featured image by Kelly Sikkema via Unsplash

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