What I’m eating, what I’m thinking, what I’m reading, what I’m buying, and more.Continue Reading →
Have you tried exercising? (Yes, but—)
Have you tried meditation? (Yeah, once or—)
Have you tried hydrotherapy? (I’m open to it—)
Have you tried going vegan? (I don’t know if—)
Have you tried going gluten free? (I did-—)
Have you tried keto? (Well it might—)
Have you tried the Mediterranean diet? (Is that the one—)
Have you tried FODMAP? (Once or-—)
Have you tried intermittent fasting? (That doesn’t work for—)
Have you tried yoga? (Yeah once—)
Have you tried hot yoga? (That’s unhealthy for—)
Have you tried yoga at my friend’s studio? (Oh who—)
Have you tried acupuncture? (That’s not—)
Have you tried a chiropractor? (My insurance—)
Have you tried massage therapy? (I’m not—)
Have you tried Ayurvedic medicine? (What’s—)
Have you tried reflexology? (Is that—)
Have you tried reiki? (Yeah once—)
Have you tried positive thinking? (Of course—)
Have you tried going on a retreat? (That’s too ex—)
Have you tried art therapy? (I’d like—)
Have you tried getting getting more sleep? (I’d love to—)
Have you tried getting less sleep? (Well—)
Have you tried polyphasic sleep? (What is—)
Have you tried essential oils? (I’m not—)
Have you tried celery juice? (The guy who—)
Have you tried the drinks Stacy at church sells? (I don’t—)
Have you tried vitamins? (Yeah I—)
Have you tried B12 injections? (Um—)
Have you tried St John’s Wort? (That’s not sa—)
Have you tried turmeric? (Is that a—)
Have you tried raw honey? (Where do—)
Have you tried cayenne pepper? (In my—)
Have you tried biofeedback? (One time—)
Have you tried hypnosis? (I don’t—)
Have you tried music therapy? (Where—)
Have you tried red light therapy? (What’s—)
Have you tried blue light therapy? (Isn’t—)
Have you tried green light therapy? (Wait—)
Have you tried infrared sauna? (How does—)
Have you tried colloidal silver? (I heard that’s—)
Have you tried cold therapy? (I don’t—)
Have you tried a juice cleanse? (That’s—)
Have you tried bone broth? (I don’t—)
Have you tried coffee enemas? (NO—)
Have you tried seeing a psychic? (Um—)
Have you tried burning sage? (Well—)
Have you tried spending more time in nature? (Well—)
Have you tried prayer? (Of course—)
Have you tried fasting? (Yes—)
Have you tried reading the scriptures? (Ye—)
Have you tried going to the temple? (I’d—)
Have you tried praying more? (—)
Have you tried praying harder? (—)
Have you tried praying better? (—)
Have you tried going off of your medications? (That’s a bad—)
Have you tried seeing new doctors? (I like my—)
Have you tried listening to anyone else for once? (What?!)
And all I’m left with is this:
Will my efforts ever be enough for those outside my illness?
When I was a little girl, I was afraid of everything, most notably thunderstorms. Every time storms would roll in, I would get a very familiar stomach ache that would turn me into a shaking mess. I would obsessively watch the sky, studying the formations of the clouds, watching out for lightning, counting the seconds between rumbles of thunder.
In my family’s big, safe, Virginia home, I would round together the things that made me feel safe—my blankets, my stuffed animals—and was ready to evacuate to the basement at any given time. I was born in the Chicago suburbs and spent ages 3 to 5 in Minnesota—I was in several near-tornados as a little girl—and I was always prepared for the worst. Even if I was indoors, even if I was in a basement without windows—I was vulnerable. My family was vulnerable. I had to protect us from danger.
I watched The Weather Channel all the time, learning everything there was to know about my enemy—but even armed with all of this knowledge—every time the sky turned the least bit gray, I had that same stomach ache. That anxiety. That fear.
This was the beginning of my life with chronic anxiety.
The terror surrounding thunderstorms didn’t fade away until I was in high school. But my fear of thunderstorms was replaced quickly by the anxieties of everyday life of a teenager, and now adult life.
What if I fail this exam?
What if I don’t get into college?
Do my friends hate me?
Am I smart enough for this?
Do my parents like Mike more than me?
Am I ever going to learn how to conquer this?
Am I always going to feel this way?
Am I ever going to get over this?
Is this my forever?
Those meshed together with my onslaught of depression, with my undiagnosed POTS, with being a teenager, with the reality of being a normal human being, and I collapsed. Regularly.
I kept wishing I would hit rock bottom, so that at least everything would be upwards from there, but every time I thought I hit my lowest—a few months later, I stumbled upon a new challenge.
It never kept me from rebuilding though.
That’s what we did in therapy: we sat in the pain, we mourned, we made a game plan, and we rebuilt. We always rebuilt. Even if we knew another crash would eventually come.
When I went into remission from depression and anxiety after having transcranial magnetic stimulation, so many anxieties followed (and still follow) me like a ghost.
What if your meds stop working?
What if your therapist quits?
What if TMS doesn’t work?
What if you relapse?
Relapse is a word that thunders in my head and shakes me to the core, reducing me to the 8-year-old who ran quaking from summer storms.
Relapse could very well happen.
That’s the reality of anxiety, of depression, of any health matter.
But the light that follows is this:
In my teens and early 20s, I was so anxious I couldn’t even drive a car. Now, I’m sad because I miss driving.
For a while, I had so many anxiety attacks that I couldn’t hold down a job. Now, I have one with coworkers I adore.
When my friends graduated, I hated myself for not finishing college. Now, it’d be nice to have a degree, but I could dance every day because I’m not weighed down by student loans.
In 2017 I was so depressed that the only good part of my day was watching a three hour block of the TV show ER. Now, the best part of my day is actually talking to people.
A few years ago I sometimes needed to see my therapist twice a week. Now, I go 2-3 weeks without seeing her, and I feel great.
I could relapse tomorrow. It would be devastating. But every day I’m working on strengthening myself so that if relapse ever happens, I can find my way out again, and hopefully help someone out of their depths as well.
I think a lot about what the 8-year-old version of myself would think of who I am today.
Would she be proud? Would she be confused? Would she be angry, because 8-year-old Shannon expected Grown Up Shannon to have a career centered around pandas, and anything less than that is a disappointment?
I’d like to think that my younger self would breathe such a sigh of relief—because now, I like keeping my bedroom window open, especially when it rains, so I can listen to the thunder, watch the lightning, and I’m not scared of it.
And maybe, in a few years, the even older version of myself (oh God… aging) won’t have the same fears I have today.
Maybe relapse will be just like thunderstorms, and it will just be a concept that isn’t so scary anymore.
How are you?
Like, really. How are you?
I don’t really know how I am.
I was furloughed at work at the end of March—they’re hoping to bring us back in June—so I have… so much time on my hands.
I wrote a post for Dysautonomia International about ways to stay engaged while quarantined, and I suggested to people that they take Ivy League courses online or and learn new languages and do puzzles and start crafting…
I haven’t done any of these things.
I did laundry the other day. I also did some dishes. My roommate must want to wring my neck because I suck at dishes. She’s so on top of it, and I’m much more a believer in letting things soak for like 24 hours… even if they don’t need it.
I’ve been watching a lot of internet videos.
I remembered an old crush I had on a CollegeHumor writer, so my brain told me, “hey, you should watch… every CollegeHumor video, maybe, ever.”
The same part of my brain has been telling me to watch lots of episodes of Survivor on Hulu. I wasn’t allowed to watch Survivor growing up. It wasn’t a moral or ethical thing my parents had strong feelings about—my mom just thought the show was stupid and banned it.
I miss my mom and dad.
Emily and Erin suggested that I move back in with my parents for a little while so that I could quarantine with them, because seeing them is important to me.
That’d be great—except the last two times I slept there since I moved out, I threw my back out on the guest bed. Once, over Christmas where I was in pain for a few days, and the other in February, where I ended up with sciatica, and I thoroughly thought I was going to die. I looked into having the lower half of my body or spine removed but apparently that’s “impossible” and would “kill me” and I would only need the sciatic nerve removed, but even that is not really feasible. Whatever, friend in med school, I feel like you’re just not cut throat enough for my lifestyle.
My POTS is doing horribly.
Turns out, having a job was great for POTS. It gave me the structure I needed. I was on a great sleep schedule. I drank lots of water. I would get up and walk around the office… especially when I wanted to annoy my coworkers or ask my boss, “am I screwing this up?” (a daily occurrence.)
I’m afraid of leaving my apartment. An ambulance was parked outside of my building on Friday night for a few hours, and all I could think was, “Yep. Someone in this building has the virus.” I tried to argue with myself that maybe they’re like me, and they have a chronic illness and just need fluids or something. Or maybe they had one of those surprise toilet babies because they didn’t know they were pregnant, or maybe they just cut their finger off cooking (because apparently everyone is making sourdough and focaccia and weird coffee lattes and is slicing their appendages off) and didn’t want to risk a trip to the ER—
I don’t know what the people in this complex do and I don’t know if they’re licking the handrails when they walk up and down the stairs (not that I touch handrails anymore) and what if I walk into a spider web that has droplets of coronavirus in it or something like that? Is that a thing? Are you now paranoid that it’s a thing? Is this the equivalent of shouting “fire!” in a crowded movie theater? Is this a Shane Dawson conspiracy theory video?
All of this… is so much.
And I vacillate. Some days I’m great, it’s like vacation, it’s like the much needed “me” time I’ve been longing for. And other nights, I’m up until 5 in the morning because I’m afraid to fall asleep, as though sleep will cause time to start spinning out of control.
Every night I pray to God that my parents and brother stay safe and healthy. I don’t care what happens to me, but please, Lord, keep Mom, Dad, and Mike safe because if I don’t have them, I’ll fade away into nothing at all.
I worry about my chronically ill friends.
We are so well trained in how to handle life in isolation, in missing out on milestones and things we looked forward to. In being denied life’s most basic events, like grocery shopping or going to work or getting dinner with friends.
But now we have to comfort the rest of the world and teach them how to do this. We have to listen to the complaints about how hard this is. And yes, it is hard. It’s so hard. There’s nothing about this that’s easy. But we’ve been trying to tell you about life in quarantine for a while.
I don’t know what the world will look like when this is over. And for some chronically ill friends, there is no “over.”
I don’t know what my personal normal will look like. I don’t know if I want to know yet.
So I’ll keep going with this strangeness.
And in the meantime,
Tell me, how are you?
Hi, team. Coronavirus/COVID-19 is here, and it’s happening.
And I’ll be real. I’m scared. I was in denial, even when scientists said “it’s going to spread, it’s going to spread” I, and I think everyone else in the country, thought “but we’ll be OK.”
As my therapist will always tell me in a scary situation–
In a scenario where we don’t have enough information, when we still don’t know the ending, we should operate under the assumption that the ending WILL be just fine, while still taking precautions. (A little bit of “hope for the best, prepare for the worst,” but tell yourself the ending will be OK, even when you’re panicking.)
I was born and raised in the Mormon faith tradition and their culture is ALL. ABOUT. PREPAREDNESS. Growing up, we had activities where we learned how to help our families prepare for disasters and emergencies (seems kind of strange for 7-year-olds in retrospect), but I’m glad I was a part of these, because those, along with my therapist’s advice, have helped me enter a kind of zen state of mind where I focus mostly on wanting others to wash their damn hands and stay at home.
This state of mind has also allowed me to engage in really uncomfortable conversations with people where I challenge their thinking about this pandemic. Some people want to take this opportunity where the world is bunkering down and isolating to take advantage of cheap flights to go on vacation. That doesn’t fly with me (no pun intended.) I’ve been calling people out and it’s really uncomfortable, but it’s necessary.
I invite you all to do the same, because this is how we keep people safe. Social isolation, staying in place, eliminating as much contact as possible, is how we eliminate the spread of disease. Wash your hands. Don’t shake hands. Sneeze and cough into your elbow or a tissue.
Below are resources I am collecting to help inform you all and help you feel empowered. I will update this regularly, and try to keep it full of relevant information for those of us with dysautonomia.
Don’t panic, but do take every precaution.
- Coronavirus Disease 2019 (COVID-19) via CDC
- Coronavirus via WHO
- Coronavirus and Dysautonomia via Dysautonomia International *
- Coronavirus Resource Center via Harvard Medical School
- Coronavirus COVID-19 Global Cases by the Center for Systems Science and Engineering (CSSE) at Johns Hopkins University
- The Coronavirus Outbreak – The New York Times
- Map: Coronavirus and School Closures via Education Week
- Stay The F– At Home
articles & think pieces
- Cancel Everything via The Atlantic
- Coronavirus and Dysautonomia: What You Need to Know Part 1 by Dr Svtetlana Blitshteyn at The Dysautonomia Clinic
- Coronavirus and Dysautonomia: What You Need to Know Part 2 by Dr Svtetlana Blitshteyn at The Dysautonomia Clinic
- Coronavirus And Parenting: What You Need To Know Now via NPR
- The Dos and Don’ts of ‘Social Distancing’ via The Atlantic
- Fox News’s dangerous decision to downplay the threat of coronavirus via Vox
- He Has 17,700 Bottles of Hand Sanitizer and Nowhere to Sell Them via The New York Times
- How canceled events and self-quarantines save lives, in one chart, via Vox
- How to Care for Your Mental Health During the Coronavirus Lockdown via Slate
- How Millennials Are Talking To Their Boomer Relatives About The Coronavirus via BuzzFeed
- How epidemics like covid-19 end (and how to end them faster) via The Washington Post
- I’m In The Vulnerable Class For COVID-19. A Plea To Take This Virus Seriously. via LegalNomads
- Please Stop Treating Me Like I’m Disposable When You Talk About The Coronavirus via HuffPost
- Why outbreaks like coronavirus spread exponentially, and how to “flatten the curve” via The Washington Post
- Social Distancing: This is Not a Snow Day via Medium
- You Have A Fever And A Dry Cough. Now What? via NPR
- Young and Unafraid of the Coronavirus? Good for You. Now Stop Killing People. via Newsweek
tweets & twitter threads
Going out and socializing right now is like drunk driving. You’re not just endangering yourself, you’re endangering everyone around you. Because if you pick up the virus, you’re giving it a free ride to silently multiply and spread to others, even if *you* don’t feel sick.
— Katie Mack (@AstroKatie) March 19, 2020
It's surreal watching people you care about continue to go out to bars and talk about being "free" to live their lives. Crises have a way of revealing people's commitment to protecting strangers around them — how much a person views themselves as part of a larger community.
— Carlos Maza 🌹 (@gaywonk) March 15, 2020
• show no signs of illness
• not be affected by contraction
• never even know you have the virus
…and still carry it around and infect others.
Stop going to bars and restaurants. The sooner we contain the virus, the sooner we can resume the rest.
— Charlotte Clymer 🏳️🌈 (@cmclymer) March 15, 2020
Hey abled people, did you know these Corona provisions aren’t all about you? They are about keeping us chronically ill safe from you. When you don’t follow a recommendation because you feel you would be fine, you contribute to its spreading. That selfishness will kill us.
— Maddie (@williams_madd) March 13, 2020
Some of y’all have never been disappointed that you can’t go to an event you wanted to due to circumstances that are out of your hands and it SHOWS
— Shelby Hintze (@ShelbyHintze) March 12, 2020
I saw my friend on Insta on a cruise & I was like “uh oh she’s disobeying the CDC & gonna get the ‘rona™️” & sure enough two days later she’s back on insta like “I’m being sent home bc I have the coronavirus”
EVERYONE !!! BE CAREFUL !!! DO WHAT THE CDC SAYS !!!
— Cal (@calvinjburke) March 14, 2020
Isolation = you have tested positive for the virus
Quarantine = you have been in contact with someone who has tested positive for the virus & are waiting to see if you develop symptoms
Social distancing = something everyone can do to reduce the risk of transmission
— Renée Yoxon (they/them) (@reneeyoxon) March 14, 2020
- A Dermatologist’s Survival guide to #COVIDー19 handwashing via @RoxanaDaneshjou
- So my hospital tried to order ventilators … we had to order body bags instead. via @Doc_Wolverine
- Tips on food preparation and safety from a food service employee via @dylan_thyme
- Veteran Jason Kander’s story on how today’s social distancing reminds him of the DC Sniper in 2002
- What to say/not say to the immunocompromised in the middle of this pandemic via @shirastrongin
- Why the second week of March was the most critical week to practice as much social distancing as possible, and how to prevent spread of coronavirus via @tina_nguyen
- Why you should care about COVID19 via @shirastrongin
- Coronavirus via Last Week Tonight (Mar 1, 2020)
- Coronavirus Is A PANDEMIC….Technically via Doctor Mike (Mar 1, 2020)
- Doctor Fact-Checks Media On Coronavirus via Doctor Mike (Mar 8, 2020)
- Novel Coronavirus explained via ABC News (Mar 10, 2020)
- Dr. Sanjay Gupta: Panic Doesn’t Serve Any Purpose via Late Show with Stephen Colbert (Mar 12, 2020)
- Rep. Katie Porter secures promise from Trump official that coronavirus testing will be free (Mar 13, 2020)
- Health Minister Patty Hajdu on why enacting wide travel bans and border shutdowns aren’t productive via Twitter (Mar 13, 2020)
Coronavirus II via Last Week Tonight (Mar 15, 2020)
- Coronavirus Q&A for the Dysautonomia Community via Dysautonomia International (Mar 16, 2020)
- Only People With Perfect Hygiene Can Get A Perfect Score On This Handwashing Quiz via Buzzfeed
- Social Distance: The Game
- Wash Your Damn Hands Coloring Pages via @AuntMarvel
ways to help/ways to receive help
- Cloth and Homemade Mask Resource List: make or receive homemade masks
- COVID-19 Fundraiser for D.C. Food Banks via GoFundMe
- Donate Blood via Red Cross
- Donate Food via Feeding America
- Donate to users on this Twitter thread who are short on money for food and supplies
- Donate to disabled Twitter users on this Twitter thread
- Where D.C., Maryland & Virginia kids can get free meals during the COVID-19 shutdown
last updated Mar 21, 2020 at 9:30 PM