I try to live my life without regrets, but I can’t help but look back wistfully on the moments where doctors missed my many signs of POTS. My diagnosis process worked out in a really beautiful way—I made incredible, lifelong friendships I would not have otherwise had I not been diagnosed when I was 20—but damn, sometimes it’s cathartic to feel the sorrow surrounding the times my doctors missed the signs.
Early 2000s
playground before school, 2002
I had frequent growing pains growing up—my arms, my legs, my back. My mom brought it up at every doctor’s appointment. She’s normal and healthy! they would tell my parents.
I did ballet, gymnastics, and Girls On The Run, a before-school running program twice a week. I could never keep up with my peers. The posture I kept during piano lessons felt like a workout in their own rite. We brought these concerns to doctors, citing family medical histories. Doctors reinforced, I was normal and healthy.
2006
my best friend Erin and me, 2006
I was in 8th grade. I was evaluated by a cardiologist who gave me a Holter, an EKG, and an echocardiogram. At that time, I had P.E. for an hour every day at school. I participated to the best of my ability, but I was exhausted every time. I told them that I felt less fatigued sitting down doing weight training than standing up doing cardio. The doctor told me that the source of my tachycardia was due to being overweight and that I needed to go on a diet. No further help or direction was given.
2009
my friend Dolly and me, 2009
It was the summer before my junior year of high school. As a favor to a friend, I was a ball girl with my friend’s soccer team at a D.C. United game. We ran out on the field, had to stand at designated posts, and pick up any stray balls for the duration of the game. After running out on the field, I had a sustained heart rate of 180 BPM+ for over an hour. I walked off the field and team doctors took my vitals, shoved Gatorade down my throat and called my parents to pick me up. My mom tried to take me to the hospital but instead I spent the night in the bathroom sick to my stomach. We went to urgent care where they ran an EKG. Next, they sent me to the hospital for another echocardiogram, and referred me to a new cardiologist for a follow up. The cardiologist said I needed to eat more salt, drink lots of fluids, and get in shape.
2010
hanging out in a friend’s basement, 2010
Later in my junior year of high school, the new cardiologist gave me a Holter monitor and a follow up visit. He didn’t see anything wrong with my heart or vitals, and told me to go jogging every day with a group of friends, because they would hold me accountable.
2011
before my high school graduation, 2011
I saw my pediatrician for my pre-college physical and vaccinations. She asked me how I was doing, and I told her about the tachycardia that never went away, how I felt tired when I stood up, and how I was always jittery. I told her how I’d always been like this, no matter what happened. I referenced the previous episodes. She looked at my list of prescriptions, and without asking how my mood was, told me my antidepressants weren’t working. Side note: my mood was the most stable it had been in years.
2013
hydrating the best way I know how, 2013
After 10 years of my complaints that exercise hurt too much, and referrals from my PCP to check my antidepressants, my psychiatrist said, “I think there’s something else going on here.” He told me he thought I had POTS and to find a cardiologist who would agree. Once I told a cardiologist that a doctor thought I had POTS, they recognized it right away.
Hindsight
Diagnosis was the most validating experience of my life, and I am so grateful to have been given that gift when I was, even if it took 10 years to get there.
What I hope, is that in sharing these stories, in working in the dysautonomia community—
that little kids with abnormally frequent and severe growing pains and teenagers with non-stop tachycardia and young adults who keep getting their problems written off as depression—
will be listened to.
And if the culprit is actually POTS?
That they will be treated.
Hey, you.
I know, it’s here again. Your least favorite time of year. GRADUATION SEASON.
You always think it’s going to be different… like, time heals all wounds, and it’ll get easier, right?
You had a plan.
Well the plan failed.
And many days, you tell yourself that you failed. But that part’s not true.
Your body failed you—the dysfunctioning systems in your body failed you. They are what kept you from your classes, from completing your classwork, from being able to read and comprehend what was in your textbooks and in the lectures.
That’s what brought you home.
So you stayed home, to learn about your body’s illnesses. To treat them. To try something else. To try something better. And in so many ways you flourished beyond everyone’s expectations.
And you tried to go back to school, you tried to stay on “the right path” — the path of your peers, the path that gets you the college degree, the $50,000 in student loans, the memories, the new friends, the this, and the that—
And instead,
Your body decided, “I need to stay.”
And so you stayed.
You stayed sick. You stayed broken hearted.
You watched your friends grow. You heard story after story about parties and exams and roommate drama and boyfriends and break ups and late nights at libraries and streaking the quad and drinking and dollar slices and clubs and honor societies and papers and study abroads and internships and—
And “what about you, Shannon? What’s new with you?”
You could feel your heart sink into your feet every time that question was asked… you wanted to retreat into the earth and report “nothing. Nothing that matters. I’ve done nothing.” Because in comparison? Who cares about your home life?
You were supposed to be in college, having experiences. Living life.
And instead, you were home, sick.
So every year when graduation season rolled around, the pain got worse. The shame was stronger. The burden heavier.
And the year you were supposed to graduate—The Class of 2015—you knew you wouldn’t be able to bear it—so you asked your mom to drive you 1,000 miles away from all of your friends so you wouldn’t be asked to attend any graduation ceremonies.
You couldn’t be happy for them this time. You couldn’t even pretend.
It took all of your grace to tell them you were proud and you loved them because every cell in your body was screaming “It. Should. Be. Me.” and “this hurts too much” and “when do we get our turn?”
*
It’s been eight years since you graduated high school. You tell yourself, you should have been able to graduate college twice by now.
But should you?
What good would it have done you?
During your “college years” you started to learn how to treat dysautonomia—the thing that’s been incapacitating you since you were a child.
During your “college years” we tested so many different ways to treat the depression—and we finally found the methods that work.
During your “college years” you did actually take a ton of classes through your local community college–those prereqs are basically gone.
During your “college years” you fell in love with Dysautonomia International and made them your support group, your sorority/fraternity, your everything.
During your “college years” you found lifelong friends who you never had to fight with over boys or roommate issues or class projects or anything, really. Unless you wanted to fight about which pizza to order or which show to watch first.
Your “college years” were anything but traditional, and they were hard as hell, but all in all? They were good.
And yet.
As soon as they bring out the graduation cap products at Target and grocery stores and shopping malls… it still hurts.
*
It will always hurt. It just will.
You might be one of the only members of your family without a college degree. And sure, you’re still young, there’s still plenty of time to get one…
But do you want one? After all the pain and bull crap?
The heartache you feel at graduation season would suggest, yes, you want one more than anything in the world.
But it also suggests that maybe it’s one of the unobtainables in life.
Sort of like being able to stand for extended periods of time unaided by medications or excessive amounts of water and sodium and electrolytes and ultimately sitting down.
It’s OK to not have a college degree. It’s OK to not know if you’ll ever get one.
Your parents said a few years ago they want you to finish your bachelor’s.
But you also know that your parents want you to forge and follow the path that leads to your own happiness.
“Now we have to figure out, what does that look like for you?” your therapist says All. The. Damn. Time. (Why doesn’t she just TELL YOU THE ANSWER? She obviously knows it by now.)
So… for now?
Hang. In. There.
You did not fail. Your body failed.
And look around (look around, how lucky we are to be alive right now) —
You have an amazing job, with benefits!
Amazing friends.
An amazing family.
Two beautiful golden retrievers.
You are doing so well.
So don’t worry, and enjoy this season.
Because you’ve got this.
Hey! It’s been a while.
Here’s a quick little update.
I’m doing the Cheesehead Challenge, a race benefitting Dysautonomia International held in Wisconsin (hence the cheese), virtually from home in Virginia.
I’d love it if you sponsored me! I have some cool incentives to sponsor, too. If you decide to donate, leave a comment so I can send you your thank you note!
I’ll be back soon with some very overly emotional and “AM I RIGHT GUYS” programming.
Shannon
February 23, 2019
I got in a fight with my parents two nights ago. (Mostly with my mom–she was the one I yelled at. She yelled back. And I was the one who stormed off, ignoring her apology and plea for me to come back.)
When I turned 26, my dad signed me up for COBRA so I could stay on his insurance for 18 more months until I could either go full time at my current job or find another one with benefits.
My birthday was in October, and I still haven’t received my new insurance card or prescription card. It’s been fine, until last week when I went to go pick up some prescriptions on auto-refill. They tried to charge me over $1,000 for a prescription that normally costs me $1.61 for a 90 day supply. I had them hang on to it–I had enough of it at home–and immediately went to my dad, asking him what the hell was going on.
Since the incident at CVS, I’d been pushing the anxiety to the side, and Wednesday night it sort of violently erupted like Mount Vesuvius, showering my home and my family with ash and freezing all of us into place.
I couldn’t stop crying and hyperventilating. It was my biggest, scariest nightmare realized: did I have health insurance? What would happen if I got in a car accident on my way to my doctor in Baltimore the next day? What about the fact that I needed my Topamax refilled this weekend? Was I going to have to go without my primary anti-depressant?
I just couldn’t. I absolutely could not bear the thought of going through withdrawal yet again. Not now. Not again. Not after how hard I’ve worked to get to this point.
Mom tried to tell me she understood my pain, and I screamed at her and said she could never understand what I was feeling, and how dare she say that. (I told you I was freaking out.) Words were exchanged, I stormed out of the room, a door was slammed. (This behavior would have made sense 10 years ago, but I never really went through the screaming “you’re not the boss of me!” phase as a teenager, so I guess I’m doing it now in short outbursts.)
Apologies were sent an hour later, lots of my, “I’m just so scared, I have no control, I don’t know what to do,” and Mom’s “just hang in there.”
Yesterday, my dad made calls to the insurance company and told me they needed me to call in. I did so after I visited my psychiatrist (fitting that I should see him after a nuclear meltdown like this), they put me on hold for a half hour, then a nice woman named Victoria told me that it appears as though I don’t even have an account tied to my name for my insurance. She talked about creating a research investigation to create this account for my name, yadda yadda yadda, all I could hear in my head was “you don’t have health insurance.”
She never actually said those words, she never fully implied them even, but it’s like there was a Macy’s Thanksgiving Day Parade going around in my head, with big balloon floats all saying “YOU DON’T HAVE INSURANCE” and “YOU’RE SCREWED” and what did it matter what she was saying? At that moment, I was a chronically ill adult and didn’t have health insurance.
I was sitting in my car in a parking lot outside a 7-11, and all I could think about was how vulnerable I was to the world. I thought about my pill containers at home, and the limited days supply left of Topamax they held.
And I read back through my group message with my parents, and felt myself crying, re-reading the message from my mom, that she and my dad had already planned to set aside $1,700 to pay out of pocket for my medication.
$1,700.
I had just screamed at my mom last night, yelled about how my parents were letting me down, and even still they were setting aside nearly $2,000 to pay for my medication out of pocket. And that’s money they don’t really have. (I mean, who just HAS $2,000 hanging around?)
*
Dad made another call to a different hotline, and they were able to call my pharmacy and get it worked out that I have prescription coverage. I should be receiving my insurance cards in a week or so. I have no idea what’s to come of the “research investigation” that opened with Victoria today. I don’t really care. My prescriptions are covered, and I’m OK now.
*
The last 24 hours of sheer terror has only further cemented my long held belief that every single person in this world is entitled to access to affordable health care at all times. I can’t find the words for how scary it is to not know if you will be able to afford the medication that allows you to exist and function in the world.
I’ve always sort of had this idea of and slow burning fear about losing my health care, and for this 24 hour period, where I really thought it was gone for good, I can tell you that it’s unacceptable that anyone should live this way for any amount of time, ever.
Because here’s the thing:
I was always going to be OK.
To begin with, I was put on COBRA, which is a huge luxury.
Next, my dad, while not a practicing lawyer, went to law school, and is well-versed in how to navigate the healthcare system. He knows how to handle these phone calls. He knows how to make sense of what they’re saying.
And my parents were willing to pay out of pocket for my prescriptions. My mom said they’d refinance the house if they needed to. My brother even said he’d help out. I also know beyond a shadow of a doubt I could turn to my extended family.
I am the definition of privilege. And even wrapped up in this privilege, I experienced the utter terror of what it’s like to live without health insurance, and it’s not something I’d wish on anyone.
No one should need a lawyer father and parents who will refinance their house and $2,000 on the side just in case there’s a hiccup in their insurance coverage.
We need equal, affordable, quality access to healthcare for all–whether that’s Medicare/Medicaid for all, or another quality solution–I don’t don’t know what’s best. I can’t pretend to. But no one should live like this.
*
P.S., a huge thank you to my parents for being my everything through this. Wowza.
It’s been crazy.
I’ve always loved the fall. It’s just a superior season to everything else, because I can finally break out my jeans and hoodies and large assortment of hats. And stop shaving my legs. It’s a good time to be a human being. Sure, season changes mean major pain for POTSies and patients of all forms of dysautonomia, but I think it all balances it out. I’d rather have body aches in the fall than feel pukey in the summer.
So, what have I been up to this glorious month?
I turned 26
My friends and I spent my birthday weekend having fun dinners, hanging out, and watching our favorite shows. Shira came out from GW and we had a great day catching up, exploring what little there is to explore in Fairfax County, and having an awesome dinner at Founding Farmers in Reston.
Shira and I met a nice panda bear outside of Founding Farmers
We also had a family dinner at one of my all time favorite restaurants, Sweetwater Tavern. I’ve gotten the same birthday dinner for the last several years, a filet and crab cake. Please, if you find yourself in Northern Virginia, treat yourself to this meal, because they know what’s up.
The best part of my birthday (besides spending it with my close friends and people reaching out to me to wish me a good one) was my birthday fundraiser for Dysautonomia International. I did one last year that I was super proud of—I raised $300, and my goal had been $250, $10 for every year I’d been alive.
This year I had the same goal, $260, $10 for every year of my life, and my friends and family went above and beyond in every way possible. The fundraiser ended with $801 total, a large part of that from my insanely generous big brother.
I’m so humbled by the generosity of my loved ones and the loved ones of my parents who donated—I’m so lucky, and Dysautonomia International is going to use this money for great things.
I taught my church group about dysautonomia
My church takes activities planning VERY seriously and named me one of the activities co-chairs last month. I told them it was a huge mistake, that I’d be bad at it (even though everyone else in my life said “oh, you’d be PERFECT for that!”), and my church leaders said, “oh great, a chance for you to grow!”
I wanted to make a bunch of turquoise ribbons and bags of candy for an event and had to think of an activity for one of our Monday night get-togethers, so I combined the two. I got to teach everyone about dysautonomia and POTS and put them all to work. It was great–there weren’t many people there that day, but they were receptive. They asked questions. They were surprised when they learned how common it was. And they were so helpful.
So, if you’re ever in my position: you’re an activities director with a need to plan something, put your church group to work.
The Town of Leesburg declared October Dysautonomia Awareness Month
Every year, volunteers for Dysautonomia International across the world reach out to their local government leaders to ask that they declare it Dysautonomia Awareness Month in their respective towns, counties, states. I did the same. The town council and mayor of Leesburg, VA issued a proclamation declaring it Dysautonomia Awareness month and I got to speak a little bit on why it’s so important that we recognize dysautonomia and its related disorders.
A group of dysautonomia warriors (including my parents and big brother) came out to accept the proclamation from the Leesburg Town Council
I hung out with some neurologists
Lauren Stiles, queen/President of Dysautonomia International (and really just queen of dysautonomia in general), invited me to be one of the exhibitors at the American Association of Neuromuscular & Electrodiagnostic Medicine Conference at National Harbor. I was excited for the experience, because I love a good conference, and despite living in the DC area, I’d ever been to National Harbor before. It was nerve racking though—while I love talking about dysautonomia and POTS to my friends and people I meet day to day, I’m very nervous when talking to doctors.
Lauren Stiles and me at our booth
I was very symptomatic, but I had a great time watching doctors get interested in dysautonomia at the conference. So many of them have dysautonomia patients but don’t have the resources to treat them, and Dysautonomia International is there to help by facilitating physician education programs with those doctors at their hospitals or universities.
I got a zebra friend from the National Organization of Rare Diseases
We lit up the Capital Wheel turquoise!
While we were at the AANEM conference, we planned a get together at National Harbor. We lit up the Capital Wheel at National Harbor turquoise as a part of Dysautonomia International’s campaign to #ShineaLightonDysautonomia this year and it was STUNNING. The first night of AANEM was the test run for the wheel and Lauren and I rode the wheel which was amazing. It was so beautiful up there—scary, but beautiful—and seeing a monument lit up for your organization and cause is exhilarating.
The night of our get together (that we intended to take big group photos with the wheel), had POURING rain, the type of rain where you step outside for two seconds and you’re soaked to the bone.
Still, a huge group turned out for dinner and we had a great time getting to know each other, talking about what does and doesn’t work for treatment, lamenting over how awful the barometric pressure changes have been making us feel (season changes are not kind to POTSies!), and adding salt to our food.
Dr. Abdallah and me! I haven’t seen him in months and I was so excited to tell him how well I’ve been doing. He was so happy and thrilled for me. He’s one of the most compassionate doctors in any field and dysautonomia patients are lucky to call him ours.
I launched Dysautonomia International’s 2018 Online Charity Auction
Over the last few months, I’ve been reaching out to independent businesses, online shops, artists, stores owners with connections to dysautonomia, and asking them to contribute to our online auction. I did this last year and we had great success, and I’m excited to see how it turns out this year!
Visit the auction here and bid on items before in closes on November 2!
My friends raised awareness
It’s been a great month. Busy. So busy. I love Dysautonomia Awareness Month because everyone rallies together to do their best work to raise awareness in 31 days.
One thing that really touched me was when my best friend Erin, dedicated her precious puppy’s first birthday to Dysautonomia International:
Thank you
For being there. For reading my posts. For celebrating my birth month and my favorite awareness month.
It’s been an incredible October.
I can’t wait for next year.