The Unbreakable Hope

A blog about my experience with chronic illness and finding hope in the darkest days

Tag: dysautonomiaawarenessmonth

Start Small, Start Today: How to Get Involved With Dysautonomia Awareness Month

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On October 5, 2024

In Uncategorized

The air is crisp and the leaves are falling (somewhere else though, further north of Texas). Warm, autumn light settles softly onto everything, painting ordinary spaces golden. All food carries a hint of pumpkin spice, and Halloween costumes are magically coming together for the one-and-only Spooky Night. It’s October; it’s the best month of the year.

I’ve always looked forward to October, mostly because I love fall, but now, I have a new reason: October is Dysautonomia Awareness Month! 

Dysautonomia Awareness Month was started 13 years ago by a nonprofit called Dysautonomia International (DI). The organization is dedicated to advocating, funding research, and providing resources for people with autonomic nervous system disorders in 50+ countries and 200+ cities worldwide. The founder, Lauren Stiles, has POTS and is a Research Assistant Professor of Neurology who focuses on autonomic disorders. With her background, Stiles ensures that DI is a trusted resource for accurate, evidence-based information on autonomic nervous system disorders.

Awareness months are informative, fun, busy, and tiring, but they’re important. For any condition, awareness can reduce diagnostic delays, improve resource availability, and promote compassion for patients within their communities. Awareness month is especially important for dysautonomia, because these disorders of the autonomic nervous system are widely under-researched, and too often, misdiagnosed. 

Graphic of a clock explaining the average diagnostic delay for POTS is 4 years

I’m assuming that if you’re reading this post, you probably know me and have already learned what dysautonomia is. In case you’re new here, and have no idea what that word is or means (or how to even try pronouncing it), here is a brief overview:

Dysautonomia (pronounced dis-oughta’-no-me-uh) is a medical term that describes a group of conditions that affect the autonomic nervous system. Our autonomic nervous systems control all the automatic functions of our bodies, like heart rate, digestion, sweating, and more. When this system doesn’t work the way that it should, it can cause various debilitating problems. Some forms of dysautonomia are mild, while others are fatal, but all of these conditions can be incredibly debilitating. 

Many people have not heard of dysautonomia and assume it’s rare, and some forms are. But new research suggests that over 6 million Americans live with POTS, a common form of this condition, which is more than the amount of people who are diagnosed with lupus, multiple sclerosis, and Parkinson’s combined. And yet POTS receives a fraction of their research funding.

On average, POTS receives $1.5 million dollars of research funds from the NIH. This might sound like a lot, but in comparison, “other diseases that are about as common in women as POTS, like multiple sclerosis and lupus, have received an annual average funding of $118 million or $127 million respectively,” as reported by The Washington Post. To break this down, out of their $47 billion annual budget, the NIH only spends 33 cents per patient on POTS research.

POTS is not life-threatening, like MS and lupus can be, but it is dramatically life-altering. Studies from Vanderbilt and the Mayo Clinic have shown that the level of disability seen in POTS patients is similar to the disability seen in patients with congestive heart failure, or on dialysis for end-stage kidney failure. 25% of POTS patients are so disabled, they’re unable to work or attend school.  

POTS can be caused by different triggers, such as concussions, autoimmune diseases, surgery, pregnancy, and most notably, viral infections. At least 40% of POTS cases develop following an infection, so it’s not surprising that many people have developed dysautonomia after getting sick with COVID-19. In fact, research suggests the number of people dealing with POTS has roughly doubled since the pandemic, and will likely continue to grow.

Awareness is the first step towards more research and, hopefully, better treatments. At the moment, there is no FDA approved medication for POTS. Dysautonomia International has been funding more POTS research than the federal government, however, because of their tireless efforts, this is starting to change! NIH investment in POTS is increasing thanks to all the people who participate in Dysautonomia Awareness Month and have helped support this organization. In the 2023 fiscal year, the NIH funded 6 POTS research grants, which is double the amount of the previous year. With your help, we can continue to grow that number!

There are a variety of ways to get involved with Dysautonomia Awareness Month, which can be found on DI’s website and also in their recent webinar posted to YouTube. But to make things even easier for you, I have highlighted a few options below (with links!):

Join an in-person or virtual fundraiser

  • Volunteers for Dysautonomia International are hosting a 5k POTS Walk in Boston on October 19th. Don’t live in Boston? Doesn’t matter! You can join from wherever you are through a virtual registration option. Virtual participation can look however you want it to: making a donation, organizing a small walk with your family or friends, walking 5 minutes every day in October, or throwing on a turquoise t-shirt to virtually cheer on the in-person racers. Btw, in-person and virtual participants are eligible for fun prizes! 
  • DI is partnering with Panda Express again this year for another virtual restaurant fundraiser! Order pickup or delivery from any Panda Express location nationwide on October 18th and apply code 925183 in the Fundraiser Code Box at check out. 28% of sales will be donated to Dysautonomia International!

Host an in-person fundraiser

  • Many restaurants, chains or local, offer fundraising opportunities. Check out their website or reach out personally to your favorite place to eat and see if they offer dine-in days, coupon programs, or fundraiser nights for charities and nonprofits. Do some good while eating good food!
  • Organize a POTS walk/run, bake sale, sports tournament, art night/festival, get creative! Fundraisers should be FUN, so pick something you like to do, and turn it into a fundraiser! You might try thinking of what communities you’re already a part of, and how they could help out with this cause.

Host a Facebook Fundraiser

  • Want to fundraise without leaving your house? Start a Facebook Fundraiser! Located under the menu icon (in the top right corner of your Facebook page on desktop), click on the “fundraiser” tab (at the bottom right of your screen), and Facebook will walk you through the rest. Here’s a link to a Help guide, if you want more detailed instructions. 

Request a lighting event in your community

  • Many landmarks and notable buildings will change the colors of their lights for awareness efforts. Requesting a lighting event can be a fun (and usually free), way to raise awareness in your community. Dysautonomia’s awareness color is turquoise, and DI has successfully lit up many locations for awareness month, such as Niagara Falls, The Cleveland Tower, and Houston City Hall, to name a few. Many locations that often change lighting colors have an established process for requesting lighting events. If you have a place in mind, check their website for an online form or contact information for the building or monument’s management. DI provides a free letter template that you can use when making your request. 

Donate

  • When in doubt, donate! As I mentioned above, the NIH spends an average of 33 cents per patient on POTS research. We can do better than that. If you would like and are able, you can donate through Dysautonomia International’s website. Instructions for donating by check are also available through that link.

Share your story

  • If you have a form of dysautonomia yourself, one of the best ways to raise awareness in your community is by telling your story. It can feel scary to open up about your struggles, but you might be surprised at how many people can relate. Share in whatever way you feel comfortable: talk with a family member, friends, or post on your social media. One of my favorite quotes is, “The shortest distance between two people is a story.”

Share Dysautonomia International’s posts on social media

  • Getting involved with Dysautonomia Awareness Month doesn’t have to take a lot of time or energy. A simple, free, and effective way to help raise awareness is to engage with Dysautonomia International on their social media accounts. Follow, subscribe, like, comment, or share any of their content this month (or every month!)  
  • X/Twitter: @Dysautonomia 
  • Instagram: @dysautonomiaintl
  • Facebook: @Dysautonomia International
  • YouTube: @DysautonomiaInternational

Check in with someone who has dysautonomia

  • Dysautonomia Awareness Month is a great time to check in with anyone you know who has a form of dysautonomia. Chronic illness can be incredibly lonely, and building community often starts with a simple, “Hey, how’s it going?”

If you’ve made it to the end of this blog post, congratulations! You are an empathic, kind, helpful human being. Dysautonomia awareness has come a long way in the 13 years of DI’s campaign, but we’ve still got more work to do. My hope is that the first time someone hears the word ‘dysautonomia,’ it’s not in a cold, sterile exam room. I hope that in the future, if someone does develop POTS, they’re not forced to give up careers or life-long dreams, that they’ll have more options, effective treatments, and better access to specialist providers. 

We can’t change the world overnight, but we can raise awareness for dysautonomia in our communities, starting small, starting today.

What POTS Looks Like: Making the Invisible Visible

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On October 25, 2020

In Uncategorized

If you passed me on the street, you’d probably think I was a normal 20 year old girl. Well, actually, you’d probably think I was a normal 16, 17, 18 year old girl because I’m short and little and have a young face. (I get mistaken for 14 year old more than I’d care to admit…) Either way, if you saw me on the street, you would assume I was like all the other young adults you know: immature, maybe a little irresponsible or reckless, but nonetheless, fully healthy and able-bodied.

You wouldn’t know I had a disability that makes walking a challenge. You wouldn’t know that I can’t stand in showers, eat large meals, or that it takes an average of three hours every morning before my body tolerates gravity. You wouldn’t see me in an hour’s time, stretched out on the couch because outings wear me out. You probably wouldn’t even know about POTS and to that I’d say, “lucky you.”

But even if you knew I had a disability, you might still be confused because my disability doesn’t look the way you’d expect it to. I don’t have crutches or a wheelchair to symbolize my limitations (although some people with POTS do use wheelchairs), and I can walk to some extent, as long as I’m not in the middle of a flare. However, my ability to walk is limited and fleeting, and all it takes is a big lunch, a rough night of sleep, or ten minutes too many in the bright, hot sun before this privilege is taken from me. In this way, POTS is a series of losses over and over and over again.

Graphic of what different types of disabilities can look like, created by StandingUpToPOTS.

Living with an invisible illness often feels like living a double life. With clean clothes and a full face of makeup, I can pass as a vibrant, abled young person, and on a good day, I feel like one too. But makeup or no makeup, POTS is with me wherever I go. There’s no universal sick or disabled “look”. POTS can look like anyone; POTS looks like me.

Sometimes I feel grateful that my illness is invisible. It gives me the freedom to pretend, the ability to delude others into thinking I’m as well and able as them. Other times, it feels burdensome, like a dark, twisted secret, and I find myself tempted to tape an “OUT OF ORDER” sign to my front, craving some kind of tangible way to make my illness visible, validated, and seen.

Graphics created by StandingUpToPOTS, explaining the chronic, invisible nature of POTS.

Before my diagnosis, I struggled a lot with the discreet nature of POTS. It was so discreet in fact, even my doctors couldn’t see it. It took over a year of sorting through patterns of symptoms before I landed in the right doctor’s office with at last, the right diagnosis. The subjectiveness of POTS symptoms (such as dizziness, fatigue, and nausea to name a few…) perpetuates the disease’s misunderstood nature and frequent misdiagnosis; for over a year, I battled against thoughts of, “what if it’s all in my head?” and, “what if they don’t believe me?”

But for an illness that is invisible, POTS physically manifests in many ways. It looks like salt tablets and medication bottles and stacks of broth in the pantry. It looks like compression stockings, electrolyte tablets, sitting on curbs and nearby benches. It looks like liters and liters of water, fit-bits and heart rate monitors, even the towering stack of journals in my bedroom. POTS isn’t as noticeable as crutches or a wheel chair, but it’s evident if you know what you’re looking for.

  • Picture of various medical devices and foods that help manage POTS
  • Picture of myself
What POTS looks like vs. What POTS looks like

Despite this subtle visibility, I often I feel like I divide my time between two separate identities; one that’s neat, energetic and socially acceptable, and one that’s hidden, drained, weary, and spent. There’s the raw, gnarly side of me that only my couch and immediate family see, typically at the beginning and end of my day, and then there’s the presentable part reserved for strangers, friends, and brand new acquaintances. When I’m all dolled up, I look as healthy and able as anyone. But at times, a face of makeup feels like a mask, my clean clothes a costume for someone more well than me.

Sometimes POTS makes me feel like Hannah Montana, although admittedly less like a rockstar and a little bit more like a fraud. Coming home from outings with friends, the bubbly, chatty version of myself slides off like a wig, falling away once I’m within the safe walls of my home. Shuffling to the couch, I begin to claim my second self, feeling my personality abandon me as my body hits the worn out leather. During that swift moment of transformation, I’ll wonder which persona is closer to the truth, and how much of my character is merely an act.

Picture of Hannah Montana, a character on a television show that was popular on Disney Channel.

Not many people see this version of myself. They see the side of me that’s well enough to attend the party, the outing, the lunch with friends. Coming home to this drained part of myself often feels like coming home to a festering secret, and for a while, these identities felt separate and conflicting. I was convinced that the existence of one identity completely invalidated the other, that I couldn’t be the bubbly person I’ve always known myself to be and the depleted girl I’m left with once my illness takes the reigns. But the longer I navigate life with POTS, the more I understand that they are connected, that I am both. And with time, I have learned that I’m not the only one that lives this way. That all of us carry struggles that are camouflaged within.

We all harbor some kind of hardship. We all inhibit this Earth with pain that’s cloaked, covered, and concealed.

I used to think my invisible illness made me less-than everyone else, but really, if anything, it’s made me more like everyone else.

Big thank you to StandingUpToPOTS for creating the helpful graphics used in today’s blog and for expending consistent effort to raise awareness about POTS.

Snotty Sob Sessions

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On October 6, 2020

In Uncategorized

With it being the beginning of Dysautonomia awareness month and having had a pretty rough flare this weekend, POTS has been on my mind a lot lately. (Or at least more than usual, I should say.)

Because of this, I found myself knee-deep in a big, fat, snotty sob session this afternoon. It was as if the pitch-black rain cloud that’s been steadily building overhead parted, dropping bucketloads of rainfall on parched, crunchy land. It was the kind of cry that feels like a workout, that drains you but leaves you feeling lighter. Emptier too.

I cried because as much as I preach about hope, I still can’t believe this happened to me.

I cried because as proud as I am of my resilience, I’m exhausted of hearing the words “you are so strong”.

I cried because POTS is a lot to manage and tears are just the inevitable outcome of living with a disabling, chronic condition.

I cried because I don’t know what it’s like to go to college without ER visits and doctor’s appointments and dizzily wandering through hospital corridors alone.

I cried because some people get mono and get over it. Because they’re not on their third year of chronic illness, trudging through thick mud and grief on the twisty road towards recovery.

I cried because chronic illness is too much to deal with, and it’s lonely and isolating and even after all this time, scary.

I cried because if it weren’t for POTS, I would still be a music student, learning vocal scales for school, growing, refining, and polishing my craft.

I cried because progress is still so hard, even when there are people who congratulate and applaud you.

I cried because sometimes moving forward feels like a curse, because I have to bring all of this brokenness with me–this dysfunctional body that’s been through hell with its muscle twitches and tremors and dizziness and fatigue.

I cried because even though I’m doing better, recovery is still so tough.

I cried because on a bad day like today, POTS feels simply impossible to live with.

Today I also cried for everyone else who knows the pain of POTS. Who knows its physical, emotional, and spiritual toll, who’s participating in Dysautonomia awareness month right alongside me.

I cried for everyone who came down with one little virus and spent years of their life trying to recover.

I cried for everyone who’s left jobs, careers, schools and universities in order to prioritize their health.

I cried for everyone who’s sacrificed dreams, plans, and social events in order to tend to and cope with their illness.

I cried for everyone who’s ever had to choose between seeing a friend and taking a shower, who’s suffered through flares in dark rooms, alone.

Mostly, I cried for everyone who knows how much one single virus can change a life forever.

I don’t share this blog post as a way of seeking attention or praise. I share it because in order to truly raise awareness about a misunderstood disease, I must first be transparent about the reality millions of people face around the globe.

Chronic illness ain’t easy. It’s about as fun as it sounds. And I am a big believer in the power of positivity as well as the steel-like strength of unbreakable hope, but that doesn’t change the fact that chronic illness is a beast. A gruesome monster I, along with millions of others, never asked to meet yet live with day after day after day after day.

If you’ve ever battled the bullies disguised as disease, know that I understand. That I rage and cry with you, and for you.

I know how much of a warrior you are, and let me be frank–that’s not a term I use lightly.

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