Seven years ago today, at the age of 16, I had a major POTS episode. But at the time, I didn’t know it was a POTS episode. I was undiagnosed and blamed the whole event on myself, my interpretation of my own laziness, my inability to take care of my body.
My heart rate was sustained at 180+ BPM for close to two hours with a mess of other symptoms (nausea, blurred vision, I was white as a ghost, pain in all of my joints, etc.) and I ended up sleeping on the floor of the bathroom with gastrointestinal problems. My mom tried to take me to the emergency room but I was a headstrong teenager and refused. I reasoned that I was just having a stomach flareup and the tachycardia was a response to me being very out of shape after doing a bit of running around in the heat of summer.
Because for years, those were the things my cardiologists had told me when we asked about my tachycardia.
“You’re fine, you’re just out of shape.”
That night, my mom texted my psychiatrist, the only doctor along with my therapist who believed there might be something else at play besides “harmless” tachycardia. He told my mom to take me to urgent care as soon as possible.
They performed an EKG and they said there appeared to be nothing wrong, but sent me to the hospital where they performed an echocardiogram. Everything was structurally sound. We made appointments with my cardiologist. I didn’t get much help there.
You’re fine, Shannon. Drink more water. Add more salt to your diet. But you’re fine. Nothing’s wrong.
They did a holter monitor a few months later. They never really addressed the tachycardia, the fatigue, the chronic pain, any other symptom. They just referred back to the EKGs and echos. You’re fine, Shannon. You’re fine, you’re fine, you’re fine.
Seven years later, to the day, I just finished up my fourth conference with Dysautonomia International.
For four years, I have now known that I’m not “fine.” My autonomic nervous system is a disaster. Standing up, even for 10 minutes, makes me lightheaded, gives me brain fog, turns my hands bright red and makes my back feel like a twig that might snap into two.
For four years, I have had a new team of cardiologists who believe me. They run EKGs and echocardiograms and holter monitors and even when they come back “fine,” they know that the rest of me isn’t. They know that I navigate a long list of symptoms every day of my life and there’s no saying what comes next symptomatically.
For four years, my psychiatrist and therapist have been able to help me cope and learn to navigate my new normal, my new life with a chronic illness. It’s not easy, it’s not fun, but we now know what we’re dealing with. We know the card we’ve been dealt. We’re no longer in the dark.
I’m so grateful to be here, now, with the resources available to me so I feel less alone. To have friends, support, physicians and information that will keep me going for as long as I have this illness (very possibly the rest of my life.)
I’m had such a lovely weekend surrounded by hundreds of people with this shared experience of dysautonomia–whether it’s the patient or caregiver perspective, we’ve all gone through the journey of “WHAT IS HAPPENING” and have gotten to (or will get to) “OK, we got this.”
It’s not the same as it was seven years ago.
I got a really exciting text message last week.
One of my best friends got free tickets to see Fall Out Boy at her college. I was envious and called her names—that’s how we roll—and then she said “so are you free on Friday?”
I took back all of the names I called her immediately.
I was excited and my 7th grade soul started singing all of my favorite Fall Out Boy songs. Because AAAAAAM I MORE THAN YOU BARGAINED FOR YEEEEEEEEEET?
I told her I had to talk to my mom, which also felt very 7th grade, but it was true—I needed a sounding board for figuring out if I could handle going to a concert. I started going through all of the logistics.
Could I handle the travel?
I would have to travel about two hours to get to my friend’s place. Even if someone drove me there and I could sleep in the car, travel takes a lot out of me. It’s disorienting and draining. There aren’t many positions in a car I can get in to maximize blood flow. I can’t stop and jump up and down every now and then if I need to help get blood moving around to my body.
Could I handle the social stress?
I love my best friends more than anything and my closest friends and I have gotten to the point where we can communicate in grunts and sighs and TV quotes. However, she’s not the only person I’d probably encounter. She has roommates, who are super nice, but I don’t have an established rapport with them. That’s a stressor when you have anxiety, especially that of the social variety.
In addition to that, we’d be at a concert. We’d be two people surrounded by a crowd full of humans. We wouldn’t necessarily have to talk to them, but they’d be all around us. That’s enough to make anyone want to pull inward.
Could I handle a night away from home?
I am the princess from The Princess and the Pea. I wish I could be super chill and easy going, but I am the pickiest person in the world when it comes to beds. I get terrible hip pain when I sleep on any bed that isn’t mine and have to load up on ibuprofen to dull the ache the morning after.
I had to consider if I’d have enough energy over the weekend to handle the pain of sleeping in a bed that wasn’t mine because coping with pain requires a tremendous amount of energy.
(Side note: my friends are angels. They will give up their beds so I can have the comfy ones and sleep on floors for me if their couches aren’t available. I want to cry thinking about it because I am the luckiest.)
Could I handle a concert? (the biggest question)
I haven’t been to a concert in maybe a year.
When I’ve been at my healthiest and most fit, I have thought that concerts were going to be the end of me. It’s a strange dichotomy to be in heaven in the presence of the musicians who are your idols as they performing the songs that are the soundtrack to your favorite memories while your body feels like it’s going into shutdown; but that’s just how it goes. You’re smiling, in awe of how you can be in so much bliss and so much agony at the same time.
Most of the concerts/shows I’ve been to are smaller ones. I’ve been familiar with the venues and have known that they have seating available. They’ve been close to home, close to a safe place to rest. And what comforts me most is that if something happened to me—maybe if I fainted or had an incident—I’d be close to my doctors.
This is where I had to think hardest. I couldn’t even remember the last concert I’d been to. If I went to this particular concert, this would be jumping into a BIG one. I’d be putting a lot of responsibility on my friend to look after me: if someone went wrong, it’d be all on her to take care of me until my parents could get me. I also considered the fact that I might even have to leave her during parts of the show to rest, which is a huge bummer—when you bring a friend, you want to be with them the whole time.
I would be standing for hours. That could mean sweating for hours, aching for hours, cramping for hours. It would turn into a psychological game as most pain does—can you force yourself to keep enduring it? Can you ignore the pain to get through to the fun? Or will the pain win out?
I came to the conclusion that I should stay home. Jumping into this would be too much—currently, I’m not at a good health level to take this type of adventure on. If the circumstances were different—if I didn’t have to travel to the show, maybe I could do it. If it was a band with low key music rather than the upbeat dance-y music that makes everyone want to jump up and down for three hours, maybe I could handle it. But this wasn’t the right one. It wasn’t the right time.
It totally broke my heart, especially the 7th grade heart that will always beat inside me ferociously. But I had to make the decision that was best for my health, even if was a huge bummer.
There will be other shows, there will be other opportunities. But what matters most is I have a super sweet friend who understands why I had to say no and that I can feel good about my decision making process because I know it’s in my best interest.
I’m one of almost 60% of Americans on prescription medication. I started taking daily prescriptions at the age of 10 after a summer spent in excruciating and paralyzing stomach pain. I lost 20 lbs in three months refusing to eat for fear of the stomach cramping returning. Medicine is what gave me my life back. I could eat again. I could leave the house again. I could sleep through the night again.
Over the course of the next 13 years, I’ve developed more illnesses and have been put on more medications. Currently, I take 15 pills a day. There are some medications I like more than others–but I am the one that makes the decision about what goes into my body every morning and evening.
Being responsible for putting these powerful chemicals into your body every day teaches you a lot–especially when you do so for a long period of time. These are just a handful of the things that you learn.
There are no quick fixes
If there’s a magic cure-all pill, sign me up. But every medication I’m aware of exists to neutralize the extremes in your life. Whether it’s pain, mood, sleep, whatever, it helps regulate you to a place where you can get some work done.
When I’m in chronic pain with out of control tachycardia and mood swings, there’s no way I can exercise or use the tools I learned in therapy to help me navigate my emotions.
But when I’m on a beta blocker that makes my heart beat a bit more normally and an anti-depressant that makes me feel more like myself, I can get out of bed in the morning, I can get on my exercise bike and I can self-talk my way through stressful situations later.
And speaking of quick, nothing moves quickly in the world of pharmaceuticals. I was handed a prescription once and told, “you’ll probably feel better in about three to four weeks.” Having to wait a month for the potential of feeling better is rough–but it’s something you learn to get used to.
Side effects will annoy you like none other
You will gain weight. You will lose weight. Something weird will happen to your skin–you’ll get acne, or your acne will clear up, or your skin will dry up or maybe you’ll get hives or maybe everything will stay the same. Luck of the draw. You’ll start symptom tracking all the time. Is this a side effect, is this a symptom of the illness I have or is this just being a human being?
The daunting list of side effects at the end of every medication commercial would make anyone think twice about taking something, but there are plenty of meds out there whose only effects are the intended ones. And using the patience you learned from “no such things as quick fixes,” you’ll learn how to find the right medication for your body and your conditions.
You will bargain with your doctor
Sometimes you’ll agree to try medication you don’t want to take for the purpose of “gathering data.” You and your doctor will engage in a dialogue about what you both believe is best. You might hate the medication you’re on, but you take it for a while because you want to prove it’s not right for you.
This is a part of the scientific process. This is a part of having a working relationship with your doctor, if you’re lucky. If you give a little, they’ll give a little.
You will get really excited shopping for pill containers
You’ll have favorite pill containers. They’re reliable, they don’t pop open when they shouldn’t and they’re the right size, especially for travel and for your nightstand or whatever.
You’ll lose your favorite one day. It’ll be devastating. You’ll grieve. And one day, you’ll find an exact replica in a store. You’ll buy it in bulk, you never want to relive the same pain of losing it again. But in the time where you didn’t have your Beloved Pill Container, you learned that there are a few cool options out there. You became a pill container connoisseur. You like having a variety, and it’s not like they go unused.
You’re obsessed. But it’s OK, because at least you always make good use of them.
Setting up your pills every week feels like it takes longer and longer
You’ve been doing this every week, and even though you have a method down, whether it’s by alphabet or by class of medicine or by doctor or by color or by WHATEVER, it feels like it takes longer every week. WHY does putting pills into compartments take so long?
There’s no good answer. It’s a time vacuum. But take the time to do it right, or else there are dire consequences.
Everyone has an opinion that needs sharing, NOW
On the topic of medication, everyone is suddenly a doctor, holistic healer, pharmacist and a politician. They can’t pronounce what you take or what illness you have but they have a million and six opinions they want to shove down your throat instead of that pill. Because God forbid you practice autonomy over that body of yours! Don’t you know that rat poison tablet created by Big Pharma is all a part of a scheme to give you cancer and destroy the palm trees in the rainforest?
I’ve heard it all before, I’ve heard it from people I’ve just met who have seen my pill case, I’ve heard it from my friends’ parents and even my high school guidance counselor as a teenager. But their opinions don’t matter. I much prefer those of my doctors.
If you go through withdrawal, you’ll be filled with understanding and empathy for individuals in all kinds of circumstances
Despite your dutiful planning and organizing of medication, one day, you will screw up and run out. And you’ll call your doctor and they’ll be out of the office and won’t call in a refill for you until they can see you next, or all of the pharmacies in the area will be out of your medication and can’t get you a refill until Tuesday… and so on. At some point in your life, you WILL go through withdrawal, and it WILL suck.
Withdrawal is different for different types of medications, but the underlying warning for all of them is this: even though it’ll happen to everyone at some point, avoid it at all costs. It sucks. It’s scary, it’s painful, it’s messy. You will treat the people you care about the most how you feel (like garbage), and you will spend the days after praying that they love you enough to forgive you. But because they love you, they probably will. And they’ll encourage you and help you to get your pills organized.
You get to know the staff at your local pharmacy
Because sometimes you want to go where everybody knows your name, birthday and copays.
You will become acquainted with the taste of dissolving pills
There’s always that one medication that dissolves a little too quickly, or maybe you’ll have an incident where you accidentally bite down on a pill forgetting it’s in your mouth and thinking it’s a mint.
You’ll never make that mistake again because the taste of that horror will never leave your memory. Words can’t do it justice.
People will ask to buy your meds
Special shout out to everyone on ADHD medication: this one happens to you a lot.
People will find out what you take and and try to buy it off of you. They think a prescription for Adderall or Focalin or whatever it is they want entitles you to a never-ending supply of what you’re on. That, or they think that skipping a day won’t mess you up. (Spoiler alert for anyone not in the know: skipping your meds will mess you up, BIG TIME.) They don’t understand what you go through with your illnesses, they don’t understand the purpose of medication: to level the playing field to your well counterparts.
You know this truth, but not everyone else does: medication is supposed to give you back what illness has taken, not elevate you above others or give you a cheap high.
Your day doesn’t start or end without your meds
You start and end your day where your medication is. If you keep it with you at all times, you have some freedom. But if your meds are at home, you have to be at home. There are no surprise sleepovers without your pills. Staying out late gets hard because maybe the meds you had to take a 10 PM make you beyond drowsy.
It’s not all bad though, because it provides structure. Take your meds, eat breakfast. Take your meds, get in bed, go to sleep. Those are the bookends of your day. Consistency gives your balance where it might not otherwise exist.
Everything about dysautonomia sucks, plain and simple. But brain fog is one of the worst aspects because it distorts your reality. What can you rely on when you can’t rely on your thinking?
I underwent a new treatment for my depression recently (I’ll write all about it soon). Since treatment, I’ve had several moments of striking clear and vivid thinking that have shown me how I’ve been wandering around in varying degrees of brain fog for years, whether it be from dysautonomia or depression.
While I can’t discern whether my brain fog is from dysautonomia or depression at any given moment, the fact is, I have it. Until you’ve experienced the unreliability of your thinking, you probably won’t get it. But I want to help you try.
Brain fog is when you have read the same sentence five times and it still doesn’t make sense. You think about how to break the sentence down so you can comprehend it. You look at each word individually. You see them all separately. You can read each word just fine, but you can’t string them together. You work on putting together a couple of words—maybe “they went” and “the car” but your brain can’t put the pieces together. It’s not working. This post is unreadable when brain fog is present.
Brain fog is when you learn someone’s face and name and forget them both instantly. The details of the conversation you’re having fade away. You try to catch up on what they’re saying and what they look like as they talk, even as you study their face. They ask you something. Wait, what? Who are you? What is this?
Brain fog is when you say something and immediately pause, look at someone, and ask “what did I just say?” because you have no idea what words just came out of your mouth. Hopefully, it’s something very similar to what you intended. Sometimes, you don’t even remember what you were trying to say.
Brain fog is when you are asked a question, you think hard about the answer, you open your mouth and the answer disappears. You pause, you try to speak as though that will bring the answer back and ask them to repeat the question. You try to think. Nothing. Blank. Where did it go? Where did the thoughts go?
Brain fog is when you can’t remember what you did that day. You know you did something. You must have done something. But there’s nothing to be remembered. What happened?
Brain fog makes you doubt your intelligence. You know in your heart that you know things but your brain is actively betraying you. You can’t even take the steps to calmly self-talk your way out of this because the fog is too thick—you can’t remind yourself of your strengths and your accomplishments because no thoughts are getting through. All of them are getting lost. You can form some sentences, but not others. Why is this so hard? You must be stupid, you decide. That’s the only logical explanation your brain will let you come up with.
Sometimes brain fog lasts a few minutes. Sometimes an hour. And sometimes it lasts days. You do everything you can to break through the haze. You drink lots of water. You exercise. You get eight hours of sleep. You eat healthy meals. You can think perfectly fine sometimes but when you try to talk, you’re totally tongue tied.
Thank every higher power for those few moments of levity when brain fog is funny—the good days when the world isn’t so heavy and being tongue tied is hilarious and not finding the right words isn’t frustrating because there’s no rush to express yourself—there’s plenty of time. Those days don’t come by often, but they help get you by.
The holiday season is all about spending time with the ones you love. And also about spending times with people you don’t know so well but you’re at the same holiday party so you might as well make small talk. Small talk that turns into “so what do you do for school/work?” that awkwardly turns into, “should I explain dysautonomia?”
This is my very short formula for explaining dysautonomia to others. It’s been working out pretty well for me, and hopefully it’ll work well for anyone who needs any help.
Explain your dysautonomia.
My explanation for dysautonomia changes and develops weekly, just as my dysautonomia does. This illness isn’t static, it changes as frequently as I do.
My standard, quick explanation when I’m out and about is:
I have cardiac/neurological condition called dysautonomia where my autonomic nervous system which controls a ton of automatic functions gets very confused. The ANS controls your heart rate, blood pressure, digestion, et cetera. My subtype is called Postural Orthostatic Tachycardia Syndrome, and the most noticeable symptom is that every time I stand up, my heart rate jumps up at least 30 BPM, which is twice what it should. With so many things out of balance in my body, it causes extreme fatigue, brain fog, digestive issues, cardiac problems, body aches, and a ton of other problems.
In writing, it looks like a lot. But when you say it out loud, it’s not that bad. If someone gets bored listening to you explain a very complicated illness in 4-5 sentences, they’re probably going to get bored listening to everything else you have to say.
Feel comfortable with the words that you’re saying–if you feel comfortable using some doctorly words, go for it, but don’t forget who your audience is.
So all of these symptoms are listed, and someone can guess what it means for your life, but help them understand it further. What does it mean to have your heart rate jumping up 30 BPM all the time? What does brain fog mean for you versus someone else?
- Because of the dizziness, I have to be very careful every time I stand up and with every step I take.
- I have a lot of concentration problems and now have to take a reduced course load at school.
- No matter how much I sleep, I’m still fatigued most or all of the time.
- I’m on a high salt, high fluid diet in addition to taking several different medications at various times throughout the day.
- I have to use a seat in the shower because the hot water aggravates my symptoms.
Make sure the person listening can see themselves in the place of a POTSie (or any other dysautonomiac). If you want to, you can really open up, or you can keep it surface level. It’s all about what feels right for you.
Share your goals and hopes for dysautonomia.
I usually share my “next step” for treatment or my latest update.
- I’m trying a new medication and it’s supposed to help increase my blood flow and fatigue.
- My new exercise plan includes physical therapy so I’ll get some support there.
… OR, say “I don’t know what’s next.”
I’m a fan of the ever-authentic answer, “I don’t know what’s next, we’re just playing it by ear.”
Leaving things open-ended with your dysautonomia story is almost more true to the spirit of this illness: none of us know where this is going because there is no cure yet, there are no ultimate answers for what to do to treat it beyond hydrate, salt, and exercise.
Above all else, go with what feels right when explaining your story. Share everything or share nothing, as long as you feel good about it.