I’m a rambler when I’m nervous. And when I’m not nervous. When I’m perfectly fine, when I’m happy, when I’m angry, when I’m every emotion, I usually talk.
When someone gives me a question I don’t have a good answer to or don’t want to answer, I still answer. I’ll give them an answer to a related question without addressing the fact that I’m not even answering the thing they inquired about. If I’m slick enough, they won’t even notice.
But maybe now, after this declaration, they will.
Sometimes friends ask me about how I’m doing with POTS—and even though I’m always game to talk about Dysautonomia International and the work they’re doing, or maybe cool new research, or the fact that my arm fell asleep in under 30 seconds last night–I know my friend is kindly asking about my chronic health problem.
And here’s where the real baggage comes in.
chronically wide eyed and vulnerable
When there’s been no progress with POTS, I don’t want to tell them that. I hate that there’s been no changes. I hate that there’s nothing new to report in my health, I hate that sometimes it’s even getting worse, because then I’ll have to explain that yeah, sometimes that just happens, and no, it’s not my fault (even though I occasionally blame myself when I shouldn’t) because I don’t want them to blame me either (even when I know my friends and decent humans would never do that).
I run away from the reality of “chronic”, I run away from the reality of life and I divert their attention.
They ask about POTS, I answer about something else.
Sometimes I answer about the progress I’m making in therapy, how I’m not standing still or regressing. How I’m moving onward, forward; how I’m doing something that they can be proud of—even though the very act of getting through a day with one chronic illness, no less a handful, is something they can be proud of their friend for.
Because the vulnerable side of me feels like if I can’t produce results in one area, I better produce results in the other.
Today is a day where I can see things clearly, and I want to say and reaffirm to myself and to anyone who might struggle like I do at times: please don’t feel like your life has to be strictly results oriented. Making an effort, taking care of yourself, being a kind person matters so much more than producing tangible results in work or in health or in any realm. If you have a chronic illness, leave the results to the doctor. All you’re responsible for is effort, that’s all anyone can ask of you.
I didn’t make any formal resolutions for 2017 on New Year’s Eve, but every year as I get older, I realize how important it is for me to be nicer to myself. I want to treat myself today like I would treat the younger version of myself—protectively and with patience and compassion. I look at my younger self and want to wrap her up and say “it’s going to be OK, just hold on!”
I want to have those same feelings for myself now, and by having those feelings, I think I’ll be able to be more honest with myself and with my friends.
And maybe I’ll get around to answering your questions head on.
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.
In one of my all time favorite pieces of The Colbert Report, Stephen goes on a journey to sell his portrait for megabucks at a New York art gallery. He goes the whole nine yards—he has it appraised by several art appraisers, he learns all about the art scene from the art curator Simon de Pury, he shmoozes it up at the pre-auction cocktail party, and he crashes the actual auction.
The whole time, he’s happy as a clam (and a little tipsy at the cocktail party) and keeps sing-songing variations of “it’s happening!”
After it aired, I immediately adopted the entire series of phrases. I was soon greeting people by calling out, “is it happening?” or “there’s a happening happening!” every time I felt excited about something. This was occurring at a time when I was coming out of some darkness and finally seeing some light, relief. And it was my spring semester of my senior year of high school, things were very much happening. (Although they weren’t as spectacular as Stephen Colbert dancing to “Gin & Juice” with a Frenchman.)
Stephen & Simon de Pury jamming to Snoop Dog (The Colbert Report/Comedy Central)
Dysautonomia Awareness Month kicked ass all because of volunteers. (Pardon my French.)
Times Square under an assault of Dysautonomia Awareness (Dysautonomia International)
I burst into tears the day I saw that Nasdaq billboard in Times Square was lit up turquoise with the word dysautonomia plastered all over it.
Two years ago, I’d never heard of dysautonomia. My mom and I had trouble pronouncing it—her proclivity for other languages and their rules had her falling over syllables. And I couldn’t keep track of what letters went where. But we got it right pretty quickly.
Two years ago, as we were learning what this disorder was, we were also explaining it to my doctors. We were shopping for cardiologists who had also heard of it, who had heard of POTS. Some would say “no” and offer up a treatment plan, a treatment plan that was completely wrong for me.
Now? Things are different.
Today, I’m getting e-mails from my cousin at a conference for anesthesiology with pictures of poster presentations on POTS.
Today, my friend who works for a T-shirt design company is getting tons of custom orders for Dysautonomia Awareness shirts.
Today, my doctors are collaborating together on new projects. There’s a lot that they do know, and everything they don’t, they’re making plans together to figure out and to treat me in the process.
I recently got some potentially incredible news that my insurance company might be coming through for me on something big. I’m staying ridiculously cautious in my optimism, but this, like seeing the Nasdaq billboard lit up turquoise, was one of those “cry your eyes out, this is happening” moments.
I’ve been pretty fragile lately. My doctors have been wonderful, reminding me that expectations change when circumstances change. I felt like I wasn’t achieving anything and like I was cutting myself too much slack. I should just push harder, that’ll fix it, right? I wanted results, I wanted to see something happen.
But there are some times when pushing won’t fix it. There are some times when you have to pull back a little bit. A lot of people believe that you have to keep goinggoinggoing all the time to treat dysautonomia, but on the advice of my doctors, I’m pulling back just a little bit. I’m just going to keep going at a slower speed and see if I can make things happen that way.
So I’m working on being good to myself, and I’m working on those happenings.
And in the mean time, big things are happening for dysautonomia.
And that’s pretty freaking cool.
“Let’s make it happen!” (The Colbert Report/Comedy Central)
(Please, do yourself a favor and watch all three parts of Stephen’s quest to sell his portrait–it was for charity, after all: part one, part two, part three)
Along with it being Dysautonomia Awareness Month, it’s also the middle of Invisible Illness Week.
Invisible Illness Week has a fabulous meme, 30 Things About My Invisible Illness You May Not Know. And because I miss the days of MySpace and Facebook surveys, I filled it out focusing on dysautonomia, despite having what feels like close to 30 of my own Invisible Illnesses.
If you’ve done the 30 Things survey, leave your link in the comments!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Postural Orthostatic Tachycardia Syndrome (dysautonomia)
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: 2003
4. The biggest adjustment I’ve had to make is: Totally changing the way I think, approach things… and I EXERCISE NOW!
5. Most people assume: That if I look fine, I feel fine? I don’t actually know. However, when I’m with friends, I often have to ask them to slow down walking and to take breaks with me. I think people also don’t realize that even on my best days, I’m masking a few symptoms.
6. The hardest part about mornings are: Not hitting the snooze button and dealing with dizziness
7. My favorite medical TV show is: The Mindy Project (is that medical enough?)
8. A gadget I couldn’t live without is: Please don’t make me choose between my phone and computer, I love them both so much.
9. The hardest part about nights are: Keeping hopeless thoughts at bay when painsomnia hits
10. Each day I take __ pills & vitamins. 15 mandatory, 3 as needed
11. Regarding alternative treatments: I think people should do what works for them—we’re all experts on our own bodies and on no one else’s.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, what I have now—I don’t know what a visible illness is like, aside from wearing glasses for bad vision which feels pretty normal. I feel like I have more control over my life and my story this way, and people will generally believe you when you say “I’m going to be sick to my stomach,” invisible illness or not. (#protip)
13. Regarding working and career: I really want a career once I figure out what I’m good at. A psychic once told me I’d own my own business or be my own boss and that it’d happen before I’m 30 and then asked me for help with her iPhone. My #1 priority in life is having health care, so we’ll see how that works into my career goals.
14. People would be surprised to know: I tend to tell people everything, there’s not much mystery in my life (case in point this blog). Maybe that I didn’t learn how to take pills until I was prescribed them at age 10/11.
15. The hardest thing to accept about my new reality has been: That there’s no going back now.
16. Something I never thought I could do with my illness that I did was: Force myself to exercise.
17. The commercials about my illness: Don’t exist yet.
18. Something I really miss doing since I was diagnosed is: I miss my old job sometimes–I went on medical leave when I got a series of flareups and decided to officially leave when I was diagnosed and knew that standing all day just wouldn’t be a good health decision for me.
19. It was really hard to have to give up: the idea of missing out on some rites of passage—thankfully I found some ways to work it out. 🙂
20. A new hobby I have taken up since my diagnosis is: Facebook stalking POTS friends, window shopping on Etsy for Awareness jewelry (especially zebra bracelets)
21. If I could have one day of feeling normal again I would: go to a concert and see what it feels like to stand for an extended period of time as a normal person, run as far as I could just to see what it’s like
22. My illness has taught me: how to entertain myself in the waiting room at various doctor’s offices
23. Want to know a secret? One thing people say that gets under my skin is: when people tell me that I’ll like exercise one day and that the endorphins will kick in. I’m never going to like exercise. I have never felt endorphins in my entire life.
24. But I love it when people: validate me. Tell me, “yeah, that sucks!” and send me pictures of koalas, the dreamboat musicians from Jukebox the Ghost, and also remind me that everything’s going to be ok.
25. My favorite motto, scripture, quote that gets me through tough times is: “You got this.”
26. When someone is diagnosed I’d like to tell them: “Oh my gosh this SUCKS but you aren’t alone! You can do this and let me hug you and now you get to eat all the chips you want!”
27. Something that has surprised me about living with an illness is: for me, it became another member of the family. My parents sometimes discuss my doctor’s appointments with each other like I’m not even in the room.
28. The nicest thing someone did for me when I wasn’t feeling well was: bring me food and check up on me. Making meals is so exhausting during a flareup and having meals made for you (or even microwaved for you) when every bone in your body is aching is such a luxury.
29. I’m involved with Invisible Illness Week because: There are SO. MANY. INVISIBLE ILLNESSES. (All of my illnesses are!) Coming forward and saying “I have an invisible illness” can put yourself at the scrutiny of others as they wrinkle their brows and say “prove it.” But there’s safety in numbers. We’re like a giant phalanx of experiences and stories. (Sorry. I just had the phalanx imagery going on in my mind today.)
30. The fact that you read this list makes me feel:
How do you even write the first entry for a blog?
Goals? Mission statement? Two truths and a lie?
I originally wanted to start a blog because a bunch of adults* asked me “so, do you a have a blog?” this summer when I talked about possible future career goals and my experience with dysautonomia/POTS. (*I know that I’m “technically” an adult, but these were real adults, with their own health insurance plans, 401Ks and wills.) The idea resonated with me and I couldn’t shake it.
As far as other goals, they’re pretty standard (and yes, why not share my hopes and dreams with you?)—
- to reaffirm a million times to anyone with dysautonomia that their experiences are real and valid
- to give people without dysautonomia a glimpse into what life is like when their autonomic nervous systems goes haywire
- to give me yet another place to work out some of my feelings because writing is a good time
- to be another voice to raise awareness about dysautonomia
- to share as many cool water bottles, salt shakers, pill containers, and any other cool dysautonomia gear items as I can find
And one day, if I’m lucky, maybe I can make this as powerful and glamorous as Stephen Colbert’s lifestyle brand, Covetton House.
With goals out of the way—you can read my overly comprehensive diagnosis story, see pictures of my dogs on my about me page, and follow me on Twitter for random musings and blog updates.
So let’s get vulnerable! Let’s share stories! Let’s barrel through the stigma, head first, even though it’s scary. Let’s have as much fun as possible. And thanks but no thanks, dysautonomia.
Oh, and most importantly!
Happy Dysautonomia Awareness Month!