Happy Rare Disease Week!
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.
This could not be farther from the truth.
The NIH says a rare disease in the United States is a condition affecting 200,000 or fewer people. According to peer review studies, POTS affects anywhere from 1 to 3 million Americans and according to Mayo Clinic, it can affect up to 1 in 100 teenagers. (Woohoo! I was one of those.)
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.”
The diagnostic delay for POTS is still in the ballpark of about six years—although it’s shortening all the time thanks to the efforts of Dysautonomia International. (Rock on, DysIntl!)
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.
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
- Neurocardiogenic syncope – not rare – “It occurs relatively often in all age groups, ranging from 15% in children aged under 18 years to 23% in elderly patients aged over 70.” -NIH
- Inappropriate Sinus Tachycardia – not rare – impacts 1.2% of the population
- Pure Autonomic Failure – rare
- Autoimmune Autonomic Ganglionopathy – very rare – approximately 100 Americans diagnosed a year
- Multiple System Atrophy – rare – 350,000 people worldwide
- Autonomic Dysreflexia – not rare
- Baroreflex Failure – rare – AHA Journals
- Cerebral Salt Wasting Syndrome – rare
- 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
- Reflex Sympathetic Dystrophy (Complex Regional Pain Syndrome) – somewhat rare – up to 200,000 individuals in the United States -RSDSA
Now, in the interest of full disclosure (after I’ve talked about how common I am), I *do* have Ehlers-Danlos Syndrome, which is a rare disease, but my subtype, Hypermobility Type, is one of the most common forms of EDS. (A common rare disease is kind of an oxymoron, I know, but work with me.) The NIH estimates that EDS occurs in at least 1 in 5,000 individuals globally, and EDS Hypermobility type occurs in 1 in 5,000 to 20,000 people.
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.
Since I don’t always feel like I can hold up that banner of “rare disease patient,” (I need to work on feelings like I can “own” my illnesses), in the mean time I can focus on doing what I can do be a rare disease ally—which to me, means following the blogs and Twitter feeds of leaders of the community, sending some e-mails and making some phone calls to my legislators asking them to support legislation that favors the rare disease community, and doing my best to listen to stories.
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:
Given the fact that my favorite thing in the world is just sitting and talking or sleeping, it doesn’t make much sense that the highlight of my year is a four day conference that I spend the majority of each day on my feet, running around, making things happen. I *do* spend plenty of time talking, but there is so much activity that I sometimes wonder, is this really me? Is this the same girl who loves trying to break her record for how long she can sleep?
I’m a volunteer every year, so my #DysConf experience is very different than the average guests’. For me, #DysConf is non-stop. It pushes me to my limits physically, intellectually and emotionally. I usually spend at least a week recovering, which is why my recap takes a little while. (Forgive me!)
But even though I’m tired and sweaty and sore throughout those four days (and days afterwards), I love every minute. I love handing out badges and folders and goodie bags to people checking in. I love posting pictures to Dysautonomia International’s social media. I love helping run the teens program and being one of the first fellow POTSies first time guests meet. I love the Photo Booth at Karaoke Night. I love everything about it—because for four days, everyone gets me. Everyone can see in my eyes when I’m fatigued and they understand it. If I tell someone I *need* a 15 minute break to lay down, they know I’ve reached my limit and I’m not dodging responsibility—I really just need a rest.
I love this weekend because it’s the anniversary of when I was first diagnosed—when I jumped into this world feet first, and I finally had a support system that recognized, “Hey. You weren’t faking or exaggerating anything AT ALL.”
I love this weekend because not only do I get to be myself, I get to be more than myself. I get to help others in the same way that someone helped me a few years ago.
So every year, let’s do this. I can convince my body to keep going, going for #DysConf.
I arrived at #DysConf around 10 am on Friday. The hotel was just regaining power after a horrible car accident had knocked out the power in the area and blown a transformer. Tysons Corner is a CRAZY place for traffic (and one I’d avoid at all costs except two of my doctors are located in the heart of it) but thankfully things were lightening up by the time I got there.
The workroom for volunteers was full of boxes and desks and was the only legitimately cold/nice room in the conference area of the hotel (well, to me, at least. I’m overly sensitive to heat and sweat like a maniac.)
I got to work right away on stuffing folders with some other volunteers then moved over to loading flash drives with the PowerPoint presentations. (Yes, that’s done manually!) Katie, her mom, Emily and I loaded 600 flash drives using as many computers as we could find. (Katie had three, I had three, Emily was using her tablet.) Somehow we managed it within a couple of hours.
Every time a new volunteer showed up, we all got into a frenzy because it’s usually the same gang that signs up every year—over the weekend we morph into a hyper supportive family and it’s so good to see familiar faces.
And I can’t even tell you how happy we were when Elyse showed up—she’s the only person who could motivate me to take a spin class.
The infallible Elyse
Katie and I took a little time to cool down after setting up flash drives and getting cups set up for the goodie bags. We checked out our hotel room—on the 24th floor!—and had some snacks before we prepared ourselves for conference check in.
Being on the top floor, we had a view of terrifying clouds making their way into the area which was nerve-racking as conference guests were supposed to be landing at the local airports and driving in from who knows how far away.
When we were setting up check-in in the lobby, the storms finally started to break out. The lobby we were in was an atrium and at times the sound of the rain on the roof overpowered our voices. We were reading Facebook status updates from friends who were on airplanes trying to land at Dulles but were being diverted to Richmond because of how nasty it was (shout out CeCe)—I think the airport actually shut down at one point.
We kept going though—checking in soaking wet conference guests, giving them their freshly assembled folders, name tags, lanyards and goodie bags. Kyla and I checked people in together and competed for who could find the name tags quickest at our table and since I’m not sure if she reads my blog, I’m going to say I won. (Ha! Take that, Kyla!)
Katie and I FaceTimed Shira before we started our teens programming—Shira couldn’t come to #DysConf this year because of her health—but she was holding a Sick Chicks birthday party at home in California, so we introduced our attendees to each other and said “I love you” a million times.
Around 7, Katie and I started the teens program together. My loud voice came in handy for corralling kiddos and getting their attention. We did some opening ice breakers and had snacks with them, mingling over popcorn, pretzels and Gatorade. Katie ran through the conference programming with them and we invited them to play games with us for a while and tried to help the shy ones break out of their shells—it went especially well at the Apples to Apples table. (But doesn’t it always with that game?)
adding an additional hand to Dysautonomia International’s logo
I was running some other errands around the conference when Katherine finally showed up (she flew in from Boston after work—her flight was cancelled and we were afraid she wouldn’t get in until morning) and I lost my damn mind when I saw her. I hadn’t seen her since last conference (although we text preeeeetty constantly) so it was so. damn. good. to finally see her again. Katie, Katherine and I #squad hugged it out with her and then got anxious about seeing Daniel and waiting until we could FaceTime Shira some more.
We ordered a pizza and ate it on the floor of the staging room around 10 pm after Daniel FINALLY showed up—we’d been working ALL day and we were *READY* for dinner. My stomach hurt a bit afterwards (ugh) so I went up to bed early but I felt so much better when I took my evening meds and got to spend time with friends and looked over the schedule for the next day.
Everything hurt on Saturday morning. My body was so sore but we got up and ready to go.
#DysConf officially kicked off immediately after breakfast (which I wanted to stay at forever because there’s something about a buffet full of scrambled eggs and home fries that inspires me to never leave) and I was off in a storm trying to document everything for social media.
Every year I do social media for the conference and some years and some days I’m better than others. On Saturday morning there was tons of exciting stuff to check out—like an acupuncture session in the “Zen Room” which had sessions all weekend on things like yoga and meditation… and needles in your skin. People were loving it though and tried to convince me to stay when I popped my head in. (No thanks, just the idea of it made me tachy.)
Awesome quilt where people wrote their names, locations and length of time it took them to get diagnosed
Lunch was super fancy—we did an Awards Luncheon this year rather than the Awards Dinner like we did in the past. My friends and I grabbed a table up front so I could grab pictures (and also just so we could enjoy the show.)
Dysautonomia International celebrated its Five Year Anniversary and we showed a video that practically put me in tears. Ellen and Lauren handed out the awards which also warmed my sometimes-cold heart all toasty. Everyone who volunteers and puts their heart into dysautonomia research and advancement is such a superior class of human (in my humble opinion)—Erin and Taylor won Volunteers of the Year (they put on the Race to Beat POTS I went to!), Dr. Goodman won Physician of the Year and Irina won the Amelia Moore Sparkle Award which is so well deserved. Irina does *so* much thankless work, writes up so many explanations on the Dysautonomia International Facebook page and website and makes difficult to understand information accessible to everyone. She’s absolutely BRILLIANT. (#fangirl)
As many members of the Dysautonomia International Medical Advisory Board, Board of Directors and Patient Advisory Board that we could corral at lunch
In the time between lunch and the next set of sessions, I practiced for my presentation on Hope and Recovery, specifically aimed at teenagers. Unfortunately, I was crazy unfocused because I’d been running around all before lunch and now I was a little foggy after eating.
Katherine and I were two of the presenters for Hope & Recovery along with two absolutely lovely ladies, Tess and Emily, who knocked it out of the park with their speeches. I was insanely proud of all of them and so happy to be in their company, and was happy that we all got to deliver authentic messages that weren’t overly saccharine—just 100% true to our experiences. (This includes Katherine, in case I wasn’t being clear. Everyone is just amazing.)
Emily, Tess, Katherine and me coming atcha to give you hope
Afterwards, I literally ran to my next room where I co-presented on POTS in College with Jenny. This one got a *little* dicey. Our presentation was more in a panel format and we wanted a lot of participation from our audience—but it got a little out of hand here and there. There were disagreements about what colleges are and aren’t legally liable to do; what types of things “all” people with dysautonomia experience, etc., but I felt like we handled it well and that was confirmed to me a half dozen times by kind people who came up to me after the presentation who said we did great. (Thank you, kind people! I wish I could buy you an ice cream!)
Again, I had to run to leave that presentation and go straight to another room so I could introduce one of Dr. Glen Cook’s presentations. He’s been on the Medical Advisory Board for a year but I hadn’t gotten the chance to formally meet him yet. He’s super kind and I would have loved to talk to him longer.
After taking some pictures, I sat in on one of Dr. Opie-Moran’s sessions about relationships and chronic illness. I’ve gotten to know her at conferences over the last few years and can’t say enough nice things about her—she’s absolutely lovely and makes me feel calmer just in her presence. (She’s a psychologist, so that works really well for her.) I try to attend as many of her sessions as possible and take her ideas back to my therapist (I’m convinced they would work in the same practice if Dr. Opie-Moran didn’t live in the UK) and loved her ideas and the way she did her slides. (She always throws some jokes in.)
Good social connections give you better health! (Dr. Opie-Moran says so!)
Quick shout out to Crista who rescued me that afternoon as well—I can’t imagine how bad I looked but she saw me, forced me to sit and got me two water bottles and a bunch of salty snacks. Bless you.
Afternoon sessions closed up for the day and I got to talk to my Mom who was there for the day and lots of guests from the conference. I got to meet some of my blog readers (Hi Mindy and Lindsey!!!!!) and I hugged way more people than probably wanted to be hugged by me. (I’m very sorry, but that’s just how I get at #DysConf.)
Katie, Katherine, Daniel and I left the hotel and grabbed dinner at Silver Diner. We shared a disgustingly delicious plate of cheese fries (yummm) and I ate pancakes before we trekked it back for the evening.
We FaceTimed Shira in at dinner
We had to split ways for the night—we had some different responsibilities and Katie wasn’t feeling well—I mingled and talked more before hitting the dessert reception/karaoke party. I didn’t sing (well, not until Bohemian Rhapsody at the very end of the night with a huge group)—but I did take TON of pictures with lots of people.
I woke up the same way on Day 3—incredibly sore body, hungry for the breakfast buffet, but determined to get going.
Before I hit up the opening session, I got to try a free paraffin wax treatment on my hand which was awesome—it was SO hot but my hand that got the treatment (which are already pretty soft) felt even smoother even a week later it feels softer than the other.
I loved so many of the sessions of Sunday—there was an autonomic testing demonstration (the person who volunteered was so brave); Dr. Chemali, phenomenal neurologist and also an incredible pianist!, gave a session on the autonomic nervous system and music; and the phenomenal and perfect Elyse Schwartz gave teenagers much needed coping skills for life as only she can.
Elyse with teens
I was definitely slowing down by lunch and even though the conference was almost technically over, we still had tons to do.
I went in for the closing Q&A with the expert panel which is my favorite session of the conference. Sometimes the doctors like to trail off with hyper-detailed information that goes over most everyone’s heads, but what I love most is when they disagree with each other (yes! Conflict!) OR when I get advice or a new motto I didn’t know I needed. This year I got a couple new mottos–
Immediately following the Q&A, I said goodbye to tons of people who were leaving—I got to connect with so many people this year that warmed my heart in so many ways. I’m so grateful that a lot of them live in Northern Virginia so I’ll get to see them again before next year. (There are so many people that I’m forgetting to shout out to and I’m so sorry the names aren’t at the top of my head—but alas, still a week of brain fog exists.)
After hugs on hugs on hugs, I got to work on Lobby Day materials with Katherine (Queen of all things Lobby Day) and Katie. We made schedules for 150 people (the meetings had been updated by the congressional offices as early as that morning) and we got them knocked out right in the knick of time. (We also had to make use of the printers at the front desk because they weren’t working in the business center. Whew. Good times when someone asked me to check them in at the hotel.)
I met my team at Lobby Day training that night—we got to learn some of the in’s and out’s of what to ask for, how to ask it, and how to leave an impression with members of congress—(pro tip: personal stories are what matter!!)
I love #DysConf.
I was diagnosed mere weeks before the first #DysConf in 2013 and the hotel it was held in was down the road from the house we lived in at the time. Even though I got sick at the first conference and couldn’t stay (the air conditioning didn’t work and I couldn’t handle it), #DysConf has been my lifeline from that point—it connects me to my community and reminds me why I need to do some things that are scary, like call my members of Congress and push for them to advocate for me, and reminds me why I need to take care of myself in ways I really don’t want to, like exercise. (Yeah, it always come back to that one, doesn’t it?)
#DysConf is a testament to not having to be alone anymore. It’s how I meet and connect to people who support me and people I can support because I have grown stronger.
AND I HAVEN’T EVEN GOTTEN TO LOBBY DAY YET. (click here!)
Historically, #DysConf Lobby Days have been on the hottest days of the year.
This year, at with a high of 91 degrees, it was actually the coolest Lobby Day we’d had so far… and let’s just say I FELT every single one of those degrees.
We arrived downtown later than we’d planned and booked it to the Capitol for our group photo as best as a group of POTSies could. I got to help hold the banner in the front row (holding banners is a rarity for me as a tall person), but I was relieved when the photo taking was over because OH MY GOSH it was bright and hot out.
We would be talking with our members of congress about two issues that day:
- We would ask all of them to attend or send a member of their staffs to a Congressional Briefing on Autonomic Disorders this October
- We would ask them to help us obtain funding for a CDC Epidemiological Study on POTS (which has never been done before)
I met up with Team Virginia and we walked over to the Hart Senate Office Building for our first meeting with Senator Warner. I was assigned as Group Leader (AYYY!) and was a little jittery about it but felt confident as I spent the night before practicing and going over materials with Katherine and Katie. Plus, at my previous Lobby Day, Dr. Chemali was our group leader and he was the *perfect* person to learn from in terms of persuasive speech on dysautonomia. (Pro-tip: on your first Lobby Day, invite a world class physician to go with you and beg them do the talking. They’re AMAZING at it.)
Senator Warner’s office gives out peanuts in Virginia shaped baskets because #SouthernHospitality.
Our meeting with Senator Warner’s Legislative Aide went very well—she was extremely kind and passionate about her job. She was brand new to her position—just three weeks in—but had been working in the health care field for quite some time. She listened to us closely and thanked us for educating her on dysautonomia as she hadn’t gotten to learn about disease-specific issues in her career yet. We all felt very motivated after that meeting to go on to our other ones.
Our group split in half after that point—mine went on to meet with Representative Comstock’s and Senator Kaine’s offices.
Our feet and bodies were giving out so we Uber’d across the Hill to Rep. Comstock’s office and in the middle of the meeting we heard a huge blast but all thought nothing of it. (The meeting was going well, so that’s all that mattered.)
When we came out of the building, there were ambulances next to the Capitol and policemen blocking the streets and almost no cars anywhere. We later found out that a car had run into a barrier, injuring a policeman, and the police detonated the trunk to see if there was anything dangerous inside the car.
All while we were yards away. Always fun on Capitol Hill, right!?!?
Because of the blocked traffic, we had to walk back across the Hill this time (my shoes were tearing up my feet… NOT fun), and we hung out in the Dirksen cafeteria until our meeting with Senator Kaine’s office.
Meeting with Senator Kaine’s office was great—it was definitely a flashback to my visit last February—and his staff was so enthusiastic about health matters. It meant a lot to have our voices heard (and I did feel like our voices and concerns were heard by everyone we met with); it was heartening, it was what’s SUPPOSED to happen when you meet with your representatives. It’s these types of moments that legitimize Schoolhouse Rock videos—the process seems to be working correctly!
And if it doesn’t work correctly, we got e-mail addresses and phone numbers to follow up on continuously. 😉
We walked back to “home base” after our meeting which was a room at a United Methodist Church building on Capitol Hill where we provided more snacks and drinks where the buses could pick us up. But since the accident had closed everything down on the Hill, our leaders were scrambling to figure out where to send us to get picked up.
When we finally got on the buses home, my brain started to slow down… because this meant the conference was fully over. I tried to calm down, but I still had the adrenaline of the last few days in my body.
We got back to the hotel and I said more goodbyes (there are some people you have to say goodbye to at least six times) and my dad picked me up on his way home from work. I came home with way more stuff than I arrived with—I got to take home some leftover materials and souvenirs.
This was immediately put up in my room
I arrived home, had dinner, took an hour long bath, and was surprised at how long I stayed up that night—I was still wired. I missed everyone terribly from the moment I left, but was glad to be back in my own bed (there’s nothing better).
Lobby Day was HARD, but more so physically than it was mentally.
Taking meetings with staffers from members of congress isn’t as scary as it seems once you do it a couple of times—especially when you have a group with you. The hardest part was the walking (and the fact that my shoes betrayed me.)
Sharing our stories was easy and natural. We’ll be following up with our representatives’ offices to see if we can really make change happen (hopefully we can!)—but the important thing is that it’s in their heads now and that we’ll keep going back, even if it requires another visit in 90 degrees.
I’ll just bring better shoes next time and hope no accidents happen.
FEEEEEEEELING GOOD THAT LOBBY DAY’S OVER!
» #DysConf 2017 recap Part One here
There are a few unchanging truths about me as a human being:
- I love Stephen Colbert
- Yes, I want to see a picture of your golden retriever puppy, did you really have to ask?
- I hate exercise
Here’s the catch about me and exercise, though: I’ll do it for a good reason. Usually, that reason is to get my doctors off my back.
I have a really good new reason though. In 10 days, I’m going to walk and raise money for my all time favorite charity, Dysautonomia International.
YES. I’m willing to walk a mile in the middle of June for them, because here are some of the things they’ve done for me:
- They provided me with information about dysautonomia and POTS, teaching me what my previous doctors could not
- They connected me with my cardiologist (one of the top POTS experts in the world)
- They provided doctors with powerful education seminars and tools to give them the information they need to accurately diagnose and treat dysautonomia
- They introduced me to hundreds of people and made me feel so much less alone in this disorder that went undiagnosed for 10 years
- They provided me with the best support system I could imagine (love y’all)
- They empowered me to be a stronger self-advocate not only in my doctors’ offices but with my own government
- They gave me opportunities to volunteer and give back to my community
- They fund tons of research studies
- They gave me opportunities to participate IN those research studies
SO HERE’S WHERE *YOU* COME IN.
Dysautonomia and POTS are so, so common but barely have any recognition or funding.
In the United States, an estimated 1 to 3 million Americans have POTS. By comparison, 400,000 people in the United States live with Multiple Sclerosis, and 1 million have Parkinson’s. Nearly everyone is familiar with MS and Parkinson’s—as we should be!
I want POTS to have the same recognition and funding as MS, as Parkinson’s. I want every disorder that affects and take so much from so many to have adequate funding for research.
I want it so badly that I’m willing to do what I hate most in the world—
In the middle of June.
So, will you sponsor me?
I know a mile doesn’t seem like much, but I currently do about 15 minutes of cardio every day on my recumbent bike—and walking a mile will be a huge challenge for me.
One of my cardiologists told me, “You will never enjoy exercise, your body was designed to hate it.” I suffer from excruciating back pain when I go walking in addition to tachycardia, sweating, joint pain, weird tingling sensations and general grumpiness. (Tell me you wouldn’t be grumpy if everything in your body hurt.) But the statement this makes: that I’m doing what I can, that I’m on my way to recovery every day, and helping Dysautonomia International in the process? Let’s do it, man.
It would mean the world to me if you could spare a couple of dollars for Dysautonomia International—I volunteer what I can to this amazing organization that changes lives, and if you could help us continue what we do with a donation—I would appreciate it so much.
I realize this was a bit long. But that’s a fourth fundamental truth about me—I have difficulties being concise.
A month ago, I had one of those big nights you remember forever.
I’ve felt nervous writing my recap blog—I wanted to do it justice—but I realized I’ve worked myself into so much of a tizzy that I haven’t written anything at all now because I’m in a writing paralysis. (Isn’t it fun being perpetually stuck in your own head?)
So now’s the time to share—forgive me if it’s a bit long, but when you get your 15 minutes of fame, you document it thoroughly, even if it’s belatedly.
Last January, you could say I was a bit distraught about Trump’s inauguration. Thankfully, my uneasiness propelled me into action and I spent a lot of nights with insomnia writing letters to senators and representatives on committees about issues that mattered to me—the Affordable Care Act, disability rights (especially pertaining to education), the travel ban…
My friend and I protested the travel ban at Dulles International Airport on January 29
One of my state senators, Tim Kaine (and still America’s step-dad, thanks John Oliver), put out a form for Virginia residents to share their stories about the ACA and how it affected them. I wrote him a letter about how provisions of the ACA like mandates that patients with pre-existing conditions can’t be denied care and children can stay on their parents’ insurance until they’re 26 were life-changing for my family and me.
A few weeks later, his staff got in touch with me and asked permission for Senator Kaine to share my story. I fell over myself saying “yes! of course!” because that’s one of the many (many) reasons I’m open about my life. If anything I’ve been through can help someone else, if my story can be shared to help others for a bigger, positive purpose, then yes, share it.
(I also asked his office to send along a lot of my personal feelings about cabinet nominations to which they kindly obliged. I’ll say this until I’m blue in the face: Senator Kaine’s staff is the best.)
On February 9, during Tom Price’s hearing to become the Health & Human Services secretary, Senator Kaine read a selection of the 1,000+ letters sent to him about the ACA and mine was one of them.
I nearly fell off my bed when I watched the video, my hands were shaking watching my senator, a man who was nearly Vice President of the United States, read my words and have them entered into the senate record.
Throughout my life, so many things I have said have been brushed aside and ignored by countless people in various positions of authority—doctors, teachers, school administrators, church leaders, bosses, group leaders in peer projects… For me, validation of my feelings and experiences from individuals I value is particularly significant and in a very real sense, healing.
I don’t know how much more validated I could possibly be: I was being supported by a high ranking government leader, vowing to take my side and fight for the ACA because of my story and stories like it.
Phrases like “hell yeah!” came to mind. (As well as “suck on that!” to all of the people who have doubted me throughout my life.)
I was flying high for the rest of the month, assuming these were my 15 minutes of fame. Then, I got another phone call at the end of February inviting me to be Senator Kaine’s personal guest to the Joint Session of Congress, basically the State of the Union lite.
NO BIG DEAL EXCEPT THAT IT IS (and then my brain short circuited.)
So how do you prepare to attend a Joint Session of Congress?
For me, it involved:
You could say I was a bit nervous…
- getting my hair cut
- buying a new outfit because I own almost exclusively t-shirts, jeans, yoga pants and a denim jacket
- buying makeup to make myself look presentable
- spending hours writing, writing, writing because I had to come up with something smart to say
- FREAKING out because even though I’d done lobby days with Dysautonomia International, and one of my childhood friends’ father was a congressman, this was so different—
I got to bring my parents to the Senate Russell building on February 28. We arrived in the late afternoon and got to know several of Senator Kaine’s staffers who went over my schedule for the evening.
We talked about how his office works—my family and I got to grill them on what they do, the inner workings of Senator Kaine’s schedules, and everyone was so kind and patient with us. (This says a lot about what they go through on a daily basis—my dad’s questioning is very long, very inquisitive, very thorough.)
What nearly every person said is that constituents’ stories are what drive them to do their jobs. No one I spoke to has a personal agenda or even an axe to grind—they’re doing their jobs to make the country a better place.
I did an interview for a local TV station (I never got to see if they used it, but the reporter and cameraman were awesome), had some snacks (three cheers for free Virginia products—peanuts and Pepsi beverages) and kept trying to think of things to say that would make me sound smart.
Tim Kaine is my new best friend, even if he doesn’t know it
Senator Kaine met with my parents and me for a good half hour—he’s the real deal. He took so much time to ask my parents about how and where they grew up and met, about if they had any other kids (my brother couldn’t come because he had to work, we’ve given him endless grief about this)… and when it came to me, I felt heard.
I explained my journey through Fairfax County Public Schools—I told him how we struggled getting a Section 504. That surprised him, given what a successful school system it is, but we shared some other facts about it, and he really took the information in. I told him about POTS and dysautonomia and he picked up on the blood flow problems of POTS quickly—it was beyond heartening and made me think that he’s heard quite a few medical stories like this before. (I also got to give him a dysautonomia awareness pin which he graciously accepted!)
I’m sharing this not to necessarily convert you all to be Kainiacs (another Tim Kaine nickname we can attribute to John Oliver), but to remind you guys that good members of government exist despite Congress’ terrible approval ratings. Yes, some members are nothing short of disconcerting, but others are fueled by constituent stories and want to stand up and fight. I’ve got some really cool senators for my state–find out if you do, too.
After our meeting, Senator Kaine and I did a tele-town hall, where a software system calls Virginia residents and invites them to join in on a conference call. The Senator gave me the opportunity to again share my story about what the ACA meant to me before he answered people’s questions.
I was nervous and scared but daaang. I did it.
I told everyone how for a long stretch of time in my teenage years, I felt more comfortable in a doctor’s office than I did in a classroom. How I realized early on that it didn’t matter what I wanted to do when I grew up—I needed to choose a career that was stable, lucrative and had good health care benefits, not one that made me happy. I told them how the ACA changed that and gave me hope—it gave me the comfort that I could take extra time in school because I would have my parents’ insurance until I was 26. I could even take time off to work on my health and health only if need be. How it meant I could buy insurance and be my own boss, freelance as a graphic designer, a dream of a job I had in my mind.
I also told them that the GOP calling the ACA into question with rallying cries of “REPEAL!” without a solid, safe replacement had brought all of this crashing down. I’m now terrified that my loved ones and I will lose our insurance and our futures—we all have pre-existing conditions. Will we be OK? Will we ever have health care again?
I told them that I’m an active participant in my health, I follow my doctors’ orders, I’m a big volunteer in my patient community, I don’t take my diagnoses lying down. But for whatever reason, the plans I’ve heard from the opposition party seem to promise that I’m going to be punished for illnesses I did nothing to deserve and have done everything to get rid of but cannot.
I reminded everyone that health crises happen to all of us, and if not us, to someone we love, it’s just the nature of life. Whether it’s a chronic illness, cancer, an accident—everyone needs extra care at some point in their life, and that’s why plans and laws with protection are so important to me.
After the tele-town hall, I got ready to head over to the Capitol for the grand event. When the Senator’s office heard about how much difficulty I have with standing, they arranged for a senate doorkeeper to bring over a wheelchair and assist me from Senator Kaine’s office to the Capitol.
I couldn’t bring my phone into the house chamber, so this is the only real proof I went
This was the first time I’ve ever used a wheelchair (and the first time I’ve ever even considered using a wheelchair.) My parents were the ones insistent on me using it but I felt guilt for taking it at first—at the time I was having a good energy/health day and I felt like I was somehow gaming the system by accepting an accommodation I didn’t at the time desperately need. But when I thought about the standing in security lines, I accepted.
For those of you unfamiliar with Capitol Hill—the congressional office buildings are connected to the Capitol with underground tunnels and and a trolley system. But even with the tunnels and trolley, it’s a ton of walking and standing. That night, the route to get to the House Gallery was longer and more convoluted with at least three metal detector security check points along the way.
I was feeling great after the town hall. Top of the world, having the one of the best and most memorable nights of my life. And I got to continue that feeling by accepting the accommodation of the wheelchair. If I hadn’t, I would have been sick as a dog, panting, tachycardic, sweaty, confused, shaking. (I know my body.)
How appropriate to have that continued realization that accommodations matter at an event where I represented the ACA as a young woman who’d been living nearly her entire life with chronic illness.
After the labyrinth of halls and security checks, I arrived at the house chamber and got to my seat. I was tucked away in a back corner of the room which I thought at first was a terrible place to sit but turned out to be a huge score—I was next to several family members of members of Congress and got to network by sharing a short version of my story and told them about Dysautonomia International. I also sat 10 feet away from Sean Hannity—that was a huge trip for me seeing as my dad exclusively watched Fox News when I was a kid.
Leading up to the speech, it was hard to make out who was who on the floor of the House—from my seat with a few exceptions, everyone looked like the same old white man. (Sorry.) Thankfully, I had a great view of Senators Kirsten Gillibrand and Elizabeth Warren, two of my personal heroes and women I’d love to both see run for president one day.
The speech itself was surreal.
I live for the State of the Union, and even though it was just a Joint Session address, it sure felt State of the Union-y to me.
It was very different to hear President Trump, a new person, a new president, deliver this type of speech–President Obama was the president of my teenage years and young adulthood. It felt foreign to (1) be there in person and (2) witness a president so polar opposite to the one I was so familiar with deliver remarks in his place.
The most challenging part of the night for me, even more so than the physical strain standing up and sitting down repeatedly to clap for respected guests and a couple of issues I agreed with was the deafening applause from the Republican party when Trump brought up repealing the ACA in its entirety because it’s been a disaster, period.
I was seated on the Republican side of the room and getting caught up in their applause was painful. I closed my eyes, willing them not to cry because hearing “repeal of the ACA” leaves my future uncertain, bleak, nerve-racking.
The ACA is far from perfect, but its provisions have given me hope and security:
- protection for pre-existing conditions
- the ability to stay on my parents’ plan until I’m 26
- mental health parity
- no lifetime coverage caps
I’m publishing this post after the AHCA was thrown out before a vote. It looks hopeful that the ACA will remain the law of the land for a while, and even if that leaves me feeling a little safer, I still feel the need to advocate for it. Because health insurance is the difference between life and death for millions, my loved ones included.
That’s why this matters.
OK, and just to end this on a lighthearted note–
This is the face you make after you crushed it networking, did multiple interviews, had a great time with your senator, advocated for what matters to you, and feel like you’re on top of the world. NO BIG DEAL.
What I want everyone to get out of my experience is that this all came from writing a letter to my senator. I know that attending a Joint Session of Congress might not be the dream night to other people that it was for me, but it made some waves–I showed up in my local newspapers (and a couple of national ones!) and the issues I advocated for got some light. If there’s something you care about, start writing.
Call your members of congress. It’s scary at first, but it’s not so bad. E-mail them from their websites. Write letters. Fax them online. There are so many services that make these things so easy. If there’s something on your mind (even if it’s contrary to what I’m promoting!), let them know. Be active in your government, just like Schoolhouse Rock taught you.
AND! Please be nice to the staffers! Especially the ones on phone duty!