This is a tremendously important week to focus on advocating for recognition of rare diseases and the people who live with them, raising awareness of how common they are and how many people live with them, and teaching the public what needs to be done in the research community to eradicate them and/or help individuals live better lives with them. (Whew! What a sentence. Talk about run-ons. Please don’t tell my high school English teachers, they always got on my case about those.)
I whole heartedly support Rare Disease Week and the ultra superstar rockstars of it (lookin’ at you, Sick Chick Shira Strongin)—but I feel like it’s very important for me to use my voice to make some clarifications about the disorders I do live with—and to make sure y’all know, while I’m one of a kind, I’m not very rare.
I’m probably about as rare as these t-shirts (Photo by Diana DiGangi)
There’s a very common misconception that POTS, because it’s not well-known, is a rare disease.
The funny thing about POTS is that once you learn about it, once you meet someone who has it, you start finding POTSies EVERYWHERE. Immediately after my diagnosis, I found out that a girl I’d known for years was also in the process of getting a diagnosis. I threw myself into the POTS community, and people started sharing stories exactly like that with me. Their friends, their neighbors, friends from school and church, also discovered they had POTS soon after their friends got their diagnoses.
There are a few reasons POTS gets the misnomer of “rare.”
The primary reason is because of the lack of education surrounding POTS and dysautonomia in the physician community. You can always rely on the saying, “POTS is not rare, it’s just rarely diagnosed.”
But I think there’s a another reason surrounding the fact that POTS carries the mistaken label of “rare.”
In our journeys through chronic illness, we’re often written off as “just another” patient by doctor after doctor.
I know with one of my doctors, I like to smile and say “hey, I’m one of your most complicated patients, right?” while they scribble away on my chart because it brings me comfort in that if my case is somehow special and complex, it validates the pain and suffering I go through. That if my pain was average, I wasn’t as much of a survivor.
I know that’s not true, but it’s a habit of thinking I get sucked into all the time, and I feel like this happens to a lot of us and the doctors we get shuffled around to see.
When the title of “rare” floats around and gets mistakenly applied to POTS, I think a lot of members of our community sometimes like to take it with pride and say, “hey, my journey is rare and unique because my disease is rare and unique!” even if it’s not true about the disease.
I know I wanted to do that at first too—the title of rare is all too appealing! It makes us different and exclusive, and it gives credence to the difficult journeys we’ve gone through.
It’s damaging, though. Because by spreading incorrect information about the illnesses we live with, we damage our credibility as a patient community, and we spread the notion that someone has to have a rare disease to live a unique experience.
I know for a fact that people with rare diseases do not feel that way at all.
And it’s critical that in order to be allies to people in the rare disease community, we respect the truth of our diagnoses and respect their space in our community of chronic illness. Everyone has a place in this community, and we need to respect the space that belongs to every one of us.
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Since this blog is called Dysautonothankyou, I’d be remiss if I didn’t mention that there ARE rare forms of dysautonomia—I just happen to have the crazy common POTS. I wanted to list all of the forms of dysautonomia and mention which are common and which are rare—not as a “who’s who” but rather an educational reference.
(Unless stated, all of the following facts and statistics were gathered from Dysautonomia International.)
Postural Orthostatic Tachycardia Syndrome – not rare – 1 to 3 million
Diabetic Autonomic Neuropathy – not rare – estimated 69 million people worldwide (20% of all diabetics)
Familial Dysautonomia – extremely rare – only 350 people worldwide
Panayiotopoulos Syndrome – not rare – “13% of children aged 3 to 6 years who have had 1 or more afebrile seizures and 6% of such children in the 1- to 15-year age group.” –AAP Journals
While this makes me a rare disease patient, EDS doesn’t feel like one of my major illnesses. The three things I focus on every day are my POTS, depression, and anxiety.
Rare Disease Day is February 28, and I hope all of you with rare diseases will share your stories, and everyone who wants to support a great cause will check out some of these resources:
Last Fall, my TMS psychiatrist decided he wanted me to have a sleep study. All of my doctors have been worried about my unrelenting fatigue for quite some time and have tried approaching it from several different angles. He thought, why not get a sleep doctor involved? (Novel idea, I know.)
I met with the sleep doctor and after reviewing the general synopsis of my medical history (she only had fifteen minutes, not five hours), she ordered two sleep studies for me—one overnight, and one consisting of five naps during the day.
She also put me on a new sleep schedule. She agreed that my body does not want to sleep at night like a normal person—it just doesn’t. But we could try dialing it back a little. She wanted me to stop falling asleep to music or TV shows and have everything quiet, lights out, at 2 AM and to wake up at 10 AM.
Meh. Reasonable.
I dreaded the sleep study for many reasons—I don’t like wires hooked up to me, I don’t like sleeping away from my bed… and I tried to think of reasons to cancel it. But I manned up and showed up for it.
Guys.
I have no doubt in the world that people have had good experiences with sleep studies—but mine, along with most medical tests, was a thumbs down.
And here’s my breakdown of how it went.
8:45 PM — I arrived, already dressed in pajamas, ready for my sleep study. They welcomed me into my room, a windowless bedroom with a large memory foam mattress, arm chair, and television.
9 PM — The tech had me sit in a chair while she started attaching hooking me up to dozens of wires that all plugged into a little panel (that would later plug into the wall.) She used the stickiest paste known to mankind to attach the electrodes—I’d occasionally get it on my fingers and the only thing that removed it was hand sanitizer and humble pleading with a higher power.
The panel that became another limb for me
If a bunch of electrodes in my hair weren’t enough, they started putting them on my neck and my FACE (and using medical tape to tape them in place), they stuck EKG electrodes on my chest, electrodes on my legs, a microphone next to my mouth, a cannula in my nose, a strap around my chest, and GUYS I WAS FRANKENSTEIN’S MONSTER WITH A MILLION WIRES AND CABLES ATTACHED TO ME, COVERED IN GLUE AND TAPE, AND I WAS NOT HAPPY ABOUT ANY OF IT.
And DON’T get me started on the pulse oximeter.
Pulse oximeter? I think you mean, fun tiny meter on my finger for me to play with and make nurses and med techs angry when I won’t leave it alone.
9:45 PM — The tech told me that the sleep study was supposed to be like any normal night for me. (I don’t think she was aware that a normal night for me consisted of bed time at 2 a.m., doctor’s orders.) She finished hooking me up for the sleep study, turned out the lights, and I was set for the night. I watched TV for a while and then decided to try and sleep.
10:30 PM — I turned on the TV—it was only 10:30, and I was wide awake. I watched an hour of TV and decided I was going to try to fall asleep.
From 10:30 to 12:30, I was wide awake.
I wasn’t just awake, I was that soul-crushing awake where you’re pretending you’re asleep, but in the back of your mind, a voice keeps reminding you, “Heeeeey. Hey, you. Hey. You wish you were asleep so the time would pass quicker but you’re NOT! You’re not asleep, you’re AWAKE.” in that super annoying voice that sounds a lot like that kid you really didn’t like in Freshman P.E. (No? Is it just me who is still haunted by that kid?)
I tried everything—I thought of things my therapist would say when I’d overthink things, I repeated “who cares when I fall asleep?” at least a hundred times, I thought of plots of stories I’d like to write one day, I thought of blog posts I should write… and time kept passing.
I finally decided I needed to just clear my mind and I turned on the TV to clear my mind.
12:45 AM — After 15 minutes, the tech came in and said that because it was a sleep study, it was not time to watch television. If you ever want to feel like a child, just have someone say those words to you. You will feel RIDICULOUS.
I tossed and turned for another hour or so.
8 AM — I was abruptly woken up. With no sunlight and with off-hours, it felt like the middle of the night.
I went to the bathroom, which was awkward as I still had to manage carrying the panel that was attached to me via 20 something electrodes, came back, and a new tech started removing some (but not all) of the wires—because I’d be there all day for the nap study.
I moved from the bed to the chair so I’d stay awake. I watched morning shows—something I haven’t done in ages.
9:30 AM — Nap #1. According to the doctor, I slept during this nap. I’d call her a liar, but she has scientific data that can prove me wrong.
10:00 AM — I watched a lot of Dr. Pimple Popper videos. I was really bored.
11:30 AM — Nap #2. The doctor said I also slept for a few minutes during this nap. I agree with her (and the medical equipment)’s assessments.
12 PM — I wasn’t given anything to eat for breakfast, and while they let me order lunch, there was a mix up and it never got ordered. (UGH.) I tried to distract myself and started sending out distress texts.
No sunlight. No food. There were limited channels on the TV and the Internet wasn’t strong enough to stream Netflix. I was strictly forbidden from napping outside of my designated nap times. This was every millennial’s worst nightmare.
1:30 PM — Nap #3. My lunch from Domino’s had just arrived, but I was forbidden from eating until after the nap.
At this point, the naps felt forced and more like a torture device.
I didn’t sleep.
2 PM — I ate my boneless chicken wings faster than I’ve ever eaten anything. Domino’s never tasted so good.
I also found a stack of granola bars in the kitchenette next to the bathroom, I think they were supposed to offer me one that morning. I stole one, ate it like a bandit, and hid the wrapper in my backpack because I was afraid of getting caught.
3:30 PM — Nap #4.
The routine was old. I laid there, tried to turn off my mind, desperate to sleep, but I was wide awake. I’ve never been so awake in my entire life, despite only sleeping four or five hours the night before.
WHY.
4 PM — I started researching the outline of the Geneva Convention and started dreaming about going home and showering.
5:30 PM — MY FINAL NAP. I CAN DO THIS!
One of the techs and I made small talk as she hooked me back up and fixed some wires. She asked me if I ever take naps on normal days. “Sometimes,” I said. “You shouldn’t take naps,” she said, and then she left me to take my nap.
6 PM — I was so eager to get out of there. The tech was maybe more eager to get me out of there—the vigor with which she tore medical tape off my face will not soon be forgotten. (RIP, my epidermis.)
My dad was waiting for me in the lobby of the building and I nearly ran downstairs with all of my belongings to get outta there. I was done.
At the review appointment, I was officially diagnosed with Hypersomnia and my doctor gave me a prescription that I’m going to try out to help with the fatigue during the day. (It’s taken a while to get it filled because of insurance issues. Always insurance issues.)
I’m skeptical but optimistic—and ultimately just happy that the sleep study is over and hopefully I don’t have to get hooked up to that many wires ever again.
Holiday shopping induces a kind of paralysis for me—I want to strike the perfect level of thoughtfulness and utility while finding something really well priced. (I’M SO BROKE IT HURTS.)
I hope I can relieve you of these feelings with my gift guide!
While all of these items range in price from at little as $7 to as much as $150, I want to remind you of this: the best gift you can give someone with dysautonomia is your time and patience. (And maybe throw some $3 fuzzy socks in there or a reusable water bottle. We’ll love it.)
But my point is this: we have to sideline ourselves in life because our bodies don’t cooperate. Health always comes first, even when we want to throw it to the side and just do something fun for once. Please don’t forget us, especially at the holidays.
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Shopping reminder: when you use Amazon, shop through smile.amazon.com and select Dysautonomia International as your charity of choice! 6% of your total purchase price will be donated to them at no extra cost to you!
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Compression stockings
Sexy, right?
I’m really excited about this recommendation because this is the first time ever I get to offer you guys a discount exclusively through my blog. (OMG.)
At this year’s Dysautonomia International conference, I got to know Tomas Reyes, who’s the founder of Tramps Hosiery. He founded his company after a loved one developed dysautonomia and needed to wear compression stockings to help with her blood flow. Coming from the world of fashion in New York, Tomas wanted to design something way more fashion forward than the standard medical options available.
We had a ton of really interesting conversations about how dysautonomia and POTS affects life, and their company has been really generous to our community. AND! They’re offering 40% off your purchase (!!!) if you use the code dysautonothankyou!
*Make sure you know your recipient’s size before purchasing! Compression stockings are very tight!*
One of my favorite bits of dysautonomia advice came from one of my doctors who said “Walk more. Drink more water. Eat chips and salsa.” to encourage me to get my salt intake up.
I have definitely taken the last piece of advice a little TOO seriously.
If there’s one thing I know about life and food though, no one scoffs when chips and salsa appear—so go ahead and give the person you love an excuse to consume more in their life in a cute bowl.
If I could live a life of luxury where I could drop $50 on a single candle, I would. (Looking at you, Anthropologie.)
I’m fairly certain that all of my readers are in the same boat as I am, high class candle tastes on a budget, which is why I’m a big fan of holiday scented Glade candles. Their “Tree Lighting Wonder” scent candle smells even better than a Christmas tree and has my house and bedroom smelling so good for once.
It’s an easy win, and it looks really nice, too, so it’s not an insult to give it to someone as a gift.
Throw some candy canes and a couple of these bad boys into a gift bag and bam!, you’ve got yourself a Christmas gift. (The plug-in inserts are really good, too… but giving a plug-in gives a vibe like, “hey your house stinks, get your life together.” Candles are #classy. Take it from me, Emily Post.)
The other plus to Glade candles is that I don’t find their scents overwhelming or overpowering. Obviously, if the person you’re shopping for has Mast Cell Activation Syndrome, they might need to live in a candle free/scent free home, so check with them, and see what their needs are.
A lot of us with dysautonomia suffer from painsomnia—we’re up all night with pain and discomfort and sleep later into the afternoon. This makes the short days and long nights harder, we hardly get any sunlight.
Separately, my depression worsens with the seasons and my doctors have recommended that I use light box therapy for 20 minutes every day.
I have several friends who LOVE light box therapy and thrive on the boost it gives them. For me, it’s a nice buzz while I use it (when I remember to use it… sorry, doctors), but I know it’s a good, science-backed way to offer someone someone who who struggles with the time changes.
My dad bought me a set of Jane and Bleecker slipper socks from CostCo and I am obsessed. They are cozy, have great grips on the bottom, are cute, and fun to wear.
The blood circulation to my feet is always terrible, but it’s always worse in the winter. These stay secure around my leg and don’t fall down.
The ties *did* break off on one foot while I slept (I move around quite a bit when I sleep) but the sock is still tight and snug around my calves without being tied.
My friends have an Amazon Echo at their house and they have it wired up perfectly.
Want to turn on the lights? Tell Alexa, the Amazon assistant, to do it. Want to listen to music? Alexa does it. Need to search for something online? Alexa does it. Want to set a timer, call someone in another room in the house with an Alexa in it, use an app, buy something on Amazon? Alexa does it.
It’s a chronically ill person’s dream come true—all of these commands can be done from the couch.
Listen. I know this sounds like a joke. And it might be to some of you. Maybe it could be a funny joke gift or White Elephant present.
But this is one of the BEST products that has ever come into my life, and when you have dysautonomia, you probably have digestive problems, and THIS HELPS by changing the way you sit on the toilet! Things just… move better.
Because let’s just be real about what happens in a bathroom sometimes: straining, discomfort, really unpleasant positions… THIS FIXES THAT NONSENSE.
So if the person you’re shopping for has been complaining about digestive problems, this is step one for them.
(Maybe don’t give it to them in front of a big group of people though, unless y’all love bathroom humor and they’re a really good sport.)
I have a growing obsession with family history. This summer I got my ancestry report done by 23 and Me and while there were zero surprises (I’m 100% European. One HUNDRED percent.), it’s really cool to trace how much of what region’s DNA I have, and compare that to my family trees I have through genealogy reports. (Thank you, FamilySearch!)
What I like about 23andMe is that they have an add on you can purchase at any time after your additional kit that will analyze your DNA sample for Health information besides basic ancestry. (And the chronically ill cannot get enough information about Health.)
The Health + Ancestry Kit is currently on sale for $149 (savings of $50). The other main DNA analysis company, Ancestry.com, does not offer a package like this.
Ah, yes. You didn’t think I was going to go another year without mentioning a FitBit, did you? It’s the dream gift for people who love tracking health data!
The most important feature of this particular model (Fitbit Charge 2), is that it tracks Heart Rate, and that’s what everyone with dysautonomia is looking for: checking in on their heart rate while exercising. Or walking. Or sitting. Or breathing.
I also particularly like this model because it can help you track sleep—the number one question I’m asked when I go to any doctor. (“How much are you sleeping?” “I don’t know, a lot?”)
It can also be synced with your phone to show you text and calendar alerts on the display which is such a convenient feature.
But even if you’re not like my family, you’ve probably been interested in one of the billion types of subscription boxes out there. They range from samplings of snacks every month to makeup samples to monthly survival boxes for the chronically ill.
Do I really need to explain this? There’s so much good stuff to watch. Give the gift of entertainment. (Go watch The Mindy Project on Hulu and The Crown on Netflix. They’re SO good.)
I had an incident with one of my favorite doctors recently.
He’s a headstrong physician—just like I’m a headstrong patient. Despite this, we generally work together very well. When I’m sassy and sarcastic, he usually sees that as an indicator of my good health overall. (He’s right. If I’m screaming in righteous indignation about something, it means I’m feeling well.)
This fall, I haven’t been myself. The fatigue has been unreal. I’ve been sleeping over 12 hours a day, trying to make my symptoms go away through sheer force of will. My mind keeps repeating, “something’s not right”—it feels like somewhere in my body, something is very broken and is causing a total shut down from top to bottom.
I made the rounds with all of my doctors. I went to see Dr. X (name withheld) a few weeks ago, and everything went as usual, although I felt a bit more withdrawn and tired. Then came the end of the appointment.
He then proceeded to lecture (or browbeat) me for over 15 minutes about minute things from schedules and exercise and all of the ways I was doing treatment and chronic illness wrong.
None of what he said was inherently false. But everything in his delivery was wrong for me at that specific time—and as a doctor I’ve been working with for what feels like forever, I felt tremendously let down by his approach.
“Doesn’t he know me?!” I remember saying to my mom afterwards. “I always come through in the end!”
I was heartbroken and offended to have been condescended to like a child by someone who had been treating me with the respect of an adult since I was a teenager. I felt like in this one appointment, I had done something to lose not only that respect but also his confidence in me.
My doctor had preached to me all of the things I knew up, down, left, and right: get out of the house every day, eat three meals a day, drink more water, etcetera, do these things to feel better and be healthier—I could teach a class on these basics.
I wanted to shout “I know!” right in his face. “Don’t you think I’m doing these things as much as my body is allowing me?”
My mind was shouting, “I know these things, if there’s something I’m not doing, it’s because I feel so awful!”
It made me feel like he saw me as a failure. It made me feel like I was a failure because I couldn’t do the basic things to keep myself healthy.
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I chewed on my doctor’s words for days. (Try, weeks.) What would have been a blip on my radar had I been in a healthier, more sound place, had me anxious, hurt, and considering new doctors.
On one hand, he was just giving me “real talk.”
On the other, he was forgetting how I operate and function as a patient and as a chronically ill individual.
I have always needed doctors to meet me halfway.
I can’t pull myself out of whatever hole I’m in by myself. When I’m in a slump, I require a boost from medical intervention. But once I get that help, I can get back into the everyday habits that keep me healthy: getting out and walking around, using light box therapy, throwing in a salad here and there.
When my doctor firmly critiqued me while at my lowest and most fragile, I couldn’t take it. I’m a person who seizes on any opportunity to blame themselves, and with a half dozen incurable chronic illnesses, my life is a wide canvas to do just that. “It’s your fault you have this!”“If you didn’t do this, you wouldn’t have this.” And now my brain added in, “Dr. X thinks it’s your fault that you’re having this symptom.”
Except after weeks of processing, I can FINALLY say to myself: who the hell cares what anyone thinks besides the people in the trenches with me? The people whose opinions I care about are the ones who actively feel my pain with me and help me get up, get out of this mess until I can do it myself. The ones who help me grow, who give me blankets, pillows, and hot chocolate when I need rest, and the ones whose critique and advice is delivered in a way that that will help me, not hinder me.
I’m sick. But I work really, really hard. And in the last few weeks, I’ve pulled myself up—thanks to a boost from medicine, therapies, loved ones, and my own hard work.
I’m not “fixed,” (it’s chronic, y’all), but a few weeks ago, I couldn’t leave the house because my body was non-functional.
Last week, I was barely at home. So we’re getting somewhere.
(Thanks, to everyone who’s been a help.)
(And we’ll see what happens with Dr. X. Thankfully, he listens to the opinions of other doctors on my team. As of now, I have what I need from physicians.)
Without getting into specifics, the last few months have been some of the hardest in my life.
I’m on the upswing right now (knock on wood, pray I don’t jinx it), but I imagine this fall has been just as difficult on my loved ones.
So this Thanksgiving, thank you to everyone in my life whose patience is unending and whose loyalty is unwavering and who still love me no matter what side of myself I reveal to them.
An extra special thank you to people who encourage me to share stories and write and try my hand at being creative (however infrequently). Thank you for making me feel like I have something worth saying.
No sunlight. No food. There were limited channels on the TV and the Internet wasn’t strong enough to stream Netflix. I was strictly forbidden from napping outside of my designated nap times. This was every millennial’s worst nightmare.
