This article was originally published in September 2021 by Lauren Barton.
I recently had the privilege of interviewing a local journalist named Summer Dashe. She was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) in 2019.
For those of you unfamiliar with POTS, it’s a condition in which a change from lying to standing causes an abnormally large increase in heart rate. It is also encompassed by Dysautonomia, which is another condition where the autonomic nervous system (ANS) doesn’t work properly. POTS is more common in people who were assigned female at birth (within the 13-50 age range) or those who have experienced pregnancy, people who have experienced a viral or medical illness, a serious infection, and people who have experienced physical trauma.
The cause of POTS is unknown, and it is not curable. It’s commonly misdiagnosed as a psychiatric disorder, and its symptoms include (but are not limited to): high/low blood pressure or heart rate, chest pain, dizziness, exhaustion, and insomnia.
Upon emailing Ms. Dashe, I found she was very polite and patient with me as a novice. I am very grateful to have had this opportunity and wish her the best.
In 2019, when you wrote The Article I Wish I Had, you spoke about getting proper treatment through exercise, medication, and physical therapy. Looking back, how much would you say you’ve improved since then, and have you found any other things that help with managing POTS?
Looking back, I wish I’d better understood the permanence of this condition. I truly believed that if I did everything right–take the medication, do the physical therapy, see the best doctors–I would get a lot better. That’s not how it has gone for me. Some symptoms have gotten better with treatment, but others have gotten worse and new ones have popped up since my initial diagnosis.
Corlanor is the only medication that has significantly lowered my heart rate. Verapamil has brought down my blood pressure. I have Hyperadrenergic POTS, which causes my blood pressure to increase upon standing along with my pulse. Many people with other forms of POTS see a blood pressure drop.
Meanwhile, many POTS patients find high salt and water diets really help symptoms. Unfortunately, this doesn’t work for me. I took salt pills for a while and upped my water intake to about five liters per day and noticed no improvement in symptoms. I have since stopped the salt pills and lowered my water intake to what feels like a healthy level for me.
Physical therapy does help some, but it is tricky to make sure I’m doing the right kind of exercises, so I don’t further damage my body while making sure I don’t overdo it and exhaust myself into a cycle of further fatigue. I also have Ehlers-Danlos Syndrome, which is a genetic connective tissues disorder. I must be careful about how I am moving my body. Doctors believe EDS is what caused me to develop POTS. There is a strong connection between the two syndromes.
You can see why treating these conditions is so difficult. Some of the treatment options are contradictory to other issues. There is no cure. I think people hear “treatment” and they think, “oh, you’re good then! There is treatment!” They mistake the word “treatment” for the word “cure.” There are also different kinds of treatment. Some conditions have better treatment options than others. POTS has very few and the ones that do exist don’t work for everyone. There is currently no FDA-approved drug for POTS.
I also have Ehlers-Danlos Syndrome, which is a genetic connective tissues disorder. I must be careful about how I am moving my body. Doctors believe EDS is what caused me to develop POTS. There is a strong connection between the two syndromes.
Summer Dashe
My main autonomics (POTS) doctor is at Vanderbilt in Nashville. I also see a neurologist at Stanford. I just got back from the Ehlers-Danlos Syndrome Clinic at Mayo in Jacksonville. My investigative skills have served me well in sifting through medical research to understand my condition. I’ve also interviewed some of the top doctors in the field for news stories. Still, I can’t say I’ve come across a better treatment than anyone else. I like to remind people that none of these major hospitals are sitting on a secret cure they’re only giving their patients. If I find out about it, you bet I’ll report it!
Right now, it’s important for patients to accept that we are where we are with the research. I often think my broken body came too soon for science. I am hopeful, though, that funding will pick up and more research will be done. Perhaps those of us who are suffering now may have a purpose by helping research move forward so those who come after us have better options.
In that same article, you mentioned hiding your diagnosis from your co-workers because you were afraid of being seen as “un-hireable.” How did you get over that fear? On a related note, what would you say to somebody who is struggling with that same fear?
That was a hard fear to get over, but for the most part I really have gotten over it. Thank you for acknowledging that! For so many of us who find ourselves suddenly quite disabled by these conditions, we once deeply intertwined our worth with how hard we worked. We were the overachievers, the work without-a-breakers, the dependable always-say-yessers. To suddenly have to say no to tasks because our bodies cannot do them is a devastating reality to face.
I feared people would think I couldn’t do my job. I worried getting another job in TV news would be difficult with my story out there. Would potential bosses pass me over the second they saw that? I’ll never know the real answer to that, but I did get a new job after that story aired and I was very honest with my new boss here at WATE before she hired me. When I had to ask to have my schedule adjusted a few months after I started because I was having trouble getting upright in the mornings, it was a lot smoother because she knew this was a possibility.
My advice to anyone facing this same new reality in the workplace is to shift your perspective. You are not less hard-working now because you can’t do certain things. If anything, you are more hard-working than ever before because you’re now challenging your condition every time you get up on top of handling your work commitments. I realized that if I wanted to be successful in any position, I would have to learn to work with my symptoms rather than against them. I do not have a choice. It is absolutely necessary to be honest with my employer about my disability so we can make accommodations to help me succeed. It’s better for the company and it’s better for me. My goal is to succeed and if that means doing things a little more on my body’s terms, then that’s the only option.
I recognized that I could no longer shoot my own stories, meaning carry all my gear out in the field. I once dreamed of getting back to WFAA in Dallas, where I interned in college. I wanted to make it back there as a reporter or multi-media journalist. That’s not an option for me anymore. My symptoms won’t tolerate the physical demands of being a field reporter. I decided I had to work with my symptoms and route my career toward anchoring and management. It has been more fulfilling than I ever could’ve imagined. I anchor a few newscasts each night and am the director of storytelling at WATE. I get to train our team and help others grow. I am constantly trying to learn more to be able to continue to teach our team. It’s the best management position in local news! One of my favorite quotes says, “she stood in the storm and when the wind did not blow her way she adjusted her sails.” I just had to adjust my sails. That brought me to a wonderful place in my career.
My advice to anyone facing this same new reality in the workplace is to shift your perspective. You are not less hard-working now because you can’t do certain things. If anything, you are more hard-working now than ever before because you’re now challenging your condition every time you get up on top of handling your work commitments.
Summer Dashe
Did that fear prove itself to be true? Has anybody ever turned you down because of your condition?
I’ll never really know the answer to that. When I applied for jobs I did check the box acknowledging that I have a disability. It is illegal to deny someone a position based on that answer. I am thrilled with where I ended up, so I appreciate my boss for not only seeing past my disability and recognizing my skills, but also working with my disability to give me the best shot at success.
POTS is an incredibly hard thing to diagnose properly and is often mistreated as a psychiatric disorder. It took you two years to get diagnosed. Why do you think POTS is so hard to diagnose? Are you aware of any new research, studies, or groups that can help make a diagnosis more attainable?
The diagnostic delay in POTS patients is by far one of the biggest issue this patient population faces. It is mentally and physically damaging to spend years trying to find an answer as doctors tell you you’re fine. According to my cardiologist at Vanderbilt, much of the reason POTS has been so poorly understood and misdiagnosed is because it is predominantly a female disorder. Historically, women haven’t been taken as seriously as men in medicine. My male cardiologist will tell you some of that persists to this day and it is a massive detriment to all conditions that impact women.
POTS is actually really easy to spot if you know the signs. It doesn’t technically take any major testing to figure it out. You can do what is referred to as a “poor man’s tilt table test” at home to see if you fit the criteria for POTS. You lie down flat for, say, 10 minutes with a pulse monitor on your fingers. Then stand up and stay in one position. If your heart rate goes up more than 30 beats per minute, you likely have POTS. This tends to be quite drastic, meaning there really is no missing it. For instance, before I was medicated, my heart rate would be 70 lying flat. Upon standing, my heart rate would go up to 180. This is not an exaggeration. Many POTS patients see this kind of wild result and it is very clear something is wrong. This indicates a disorder of the autonomic nervous system. That is the system that control heart rate.
If more doctors knew this, that diagnostic delay would drop and patients would be helped sooner. Most doctors just don’t know. It is a complicated condition, but the testing for it is simple. This could be done easily in a doctor’s office routine visit if POTS was suspected.
POTS is actually really easy to spot if you know the signs. It doesn’t technically take any major testing to figure out. You can do what is referred to as a ‘poor man’s tilt table test’ at home to see if you fit the criteria for POTS.
Summer Dashe
There is SO much research happening right now. Many COVID-19 long haulers are being diagnosed with POTS. It is both frustrating and exciting to see the research coming from this. It’s not exciting to see people diagnosed with such a potentially debilitating condition. Not at all. It is, however, a bit of a silver lining to the POTS community to see the pandemic force a spotlight on this long-ignored condition. It is frustrating, though, that many of us have been suffering for a very long time and it took a pandemic to hear us. POTS is not rare. It is poorly recognized. I am hopeful to see that changing. It is changing.
Since POTS is so hard to diagnose, what do you think of researched self-diagnosis? Would you support somebody if they spent months researching the condition and made the conclusion themselves, or do you think people should leave it to the professionals?
I’ll refer to my last answer for this. POTS is not difficult to diagnose and a simple test for it can be done at home. I will always encourage people to educate themselves and advocate for their care. I will also always encourage people to see reputable doctors for confirmation and treatment.
According to The Cleveland Clinic, POTS is more common in people who have experienced physical trauma, a viral or medical illness, and a serious infection. Before POTS, did you ever experience any of those? Or did it just kind of… hit you out of nowhere?
Good question! According to Dysautonomia International, about 50% of POTS patients develop the condition after an infection. That’s why it wasn’t surprising to the POTS community to see so many COVID patients then develop POTS. I, however, did not have a virus or infection that triggered it. I had no idea, but I was born with a rare genetic condition called Ehlers-Danlos Syndrome. I’m very bendy. Without getting too far off topic, it’s a connective tissue disorder. I never knew I had it. My Vanderbilt autonomics doctor diagnosed me with POTS and then began looking for a cause. When I had no viral illness to report or major trauma, he started looking at my joints. Within minutes he suspected EDS. It is very common for EDS patients to develop POTS. Still, to me, you have to remember this felt like it had hit me out of nowhere. I was working out five days a week with a personal trainer and very healthy when suddenly, at 26-years-old, everything went wrong.
I’m sure that, besides the physical side effects, you experienced a lot of mental side effects as well. How did your symptoms play a role in your mental health, and has your mental health improved as your treatment progressed?
I am very thankful to say I am an extremely emotionally strong and mature person. I think people who know me would agree. I am often called an “old soul.” I also have wonderful friends who knew me before POTS. They believed me when the symptoms started. They have stuck by me since. My parents never doubted me. My fiance proposed a week after I was diagnosed. Many, many people don’t have that. Without that kind of support, I would undoubtedly be in a worse place mentally.
Considering that, I do frequently become very sad about my condition. I don’t talk about that often and I should. I wouldn’t say I have depression, but I would say bad days can make me feel depressed. Sometimes when I realize what this condition has stolen from my life both daily and long term, I am very, very sad about that. I think that is a perfectly normal and healthy response to a diagnosis like this. I also worry for my future and how I will make my life a successful, happy, fulfilling place when so many days are just drenched in a downpour of symptoms. Still, I believe joy and suffering can coexist. I can laugh my guts out with my best friend or fiancé in one moment and the very next have to go take a nap and miss out on the fun. That day wasn’t a total wash. Suffering and joy coexisted. I have no perfect advice for this. I’m still learning and figuring out the best ways to cope. POTS has also giving me friends I never would have made. One woman with POTS I met online after the original story aired is now invited to my wedding! We’ve never even met in real life, but we talk a lot and I can’t wait to meet her. It’s going to be a highlight of my wedding. I’ve made friends and career connections I never would’ve made without POTS. It has provided some really special opportunities, as well. Again, suffering and joy coexisting.
Considering that, I do frequently become very sad about my condition. I don’t talk that often and I should. I wouldn’t say I have depression, but I would say bad days can make me feel depressed. Sometimes when I realize what this has stolen from my life both daily and long term, I am very, very sad about that.
Summer Dashe
As for the diagnosis, that tends to be both a mental win and a loss. At first, many POTS patients are ecstatic!!! After so long being told there is nothing wrong, finally a doctor found it! It is an incredibly validating feeling to know the symptoms you are experiencing have a name. Then, however, you begin to realize the permanence of it all. You realize treatments are so limited and research is so far behind. That is crushing. Still, I believe it is healthier to know than not. You can start the mental process of accepting and living again once you have that name. It’s important to me to remind everyone, though, that if you are undiagnosed and experiencing symptoms, just because the doctors haven’t found it yet, doesn’t mean it doesn’t exist. That goes for any illness, not just POTS.
You have said before that “journalism is the purpose she chose in life and POTS advocacy is the purpose life chose for her.” You have shown a remarkable talent for presentation and storytelling, and have won awards for your journalism and advocacy. What inspired you to become a journalist? What about East Tennessee drew you to work at our local news station, WATE?
I’ve wanted to be a journalist since I was a little kid. I grew up in California and there was a big earthquake when I was young. My mom put me under the kitchen table and turned on the news. Initially, I was screaming for her to come back. She said she had to turn on the news so the people could tell us what was happening. I was calm while we watched. I’ll never forget it.
As I grew up and recognized what went into being a journalist, I realized it wasn’t just a little kid dream. I really loved this! I like helping people. I thrive on feeling helpful. This career makes me feel I am helping the people whose stories I tell. I also love writing. I say writing is my superpower. Videography is so much fun, and I am extremely creative. My favorite skills all kind of mesh together and create this perfect job that is broadcast journalism.
I like helping people. I thrive on feeling helpful. This career makes me feel I am helping the people whose stories I tell.
Summer Dashe
Knoxville was a goal market for me. My big sister and her children, my niece and nephews, are in Nashville. My main POTS doctor is in Nashville. I love the south and wanted to stay in the south. My fiance and I love to travel, so Knoxville puts us in the perfect spot to get to the beach, mountains, and major cities within a day’s drive. I was planning on staying in South Carolina until one day I looked at job openings and this position at WATE had been posted. I thought to myself, “that’s yours. That’s your job.” I called every connection I knew and had an interview within a matter of days! It’s truly a dream job. The position is a dream. This is what the little kid under the kitchen table hoped for all those years ago.
We all know that your fiance is a big part of your life, but I’ve heard the true stars of the show are your dogs, Sundae and Browen. Are they good dogs? I’ve heard they do some volunteer work.
You’ve heard right! My fiance is the best thing that ever happened to me. Sundae and Bowen tie! They were once working therapy dogs. They are great! We have since retired them, but they used to volunteer with us at nursing homes. We did extensive professional training with them. My heart is in volunteer work within the medical community for obvious reasons. I am comfortable around disabled and sick people, while many are not. We feel so lucky to have these dogs that bring us so much joy, it has been an absolute honor to share that joy with others through volunteering.
They’re our whole world. We don’t take a trip without them. They go almost everywhere with us. They are well-behaved and make people happy and that makes us happy. Sundae knows more tricks than Bowen. She is hand signal trained. She’ll wave at you if you wave at her. She also knows how to “talk about it.” She’ll howl if you tell her to “talk about it.” She’s a funny little dog. We plan everything around including the dogs. Up next? Our wedding. The pups will be our ring bearers!