Journalist Summer Dashe is a voice for patients who have long been ignored and misunderstood. Her desire to make the world better for people with disabilities drives her to share even the most personal parts of her life. Her efforts have led to viral recognition, an Emmy nomination and her unrelenting drive.
AJ: Tell us about yourself and what brought you to where you are today.
SD: I’m a former news anchor now disabled by a ruthless chronic illness. I’d wanted to be a journalist since I was little. I was determined to make that happen and I did! I loved my time in news. At 26 I began experiencing strange and debilitating symptoms. For two years I went to different doctors trying to find answers to my mysterious symptoms. Test after test came back normal. Doctor after doctor told me that anxiety and the stress of my job were to blame. It made no sense. I thrived on the adrenaline of reporting. By that point, I’d worked my way up to an investigative journalist and main anchor. I lived for the job. It couldn’t be the cause of these wretched symptoms.
Finally, in May of 2019 I was diagnosed with postural orthostatic tachycardia syndrome (POTS) and Ehlers Danlos syndrome (EDS) at Vanderbilt University Hospital in Nashville, Tenn. POTS is an autonomic nervous system disorder. EDS is a genetic connective tissue disorder. Patients with EDS often develop POTS at some point in their life, so it all tied together. I had no idea I’d had a genetic disorder my entire life, but looking back the signs and symptoms were always there. It wasn’t until the devastating POTS symptoms kicked in that everything came crumbling down.
I did everything I could to hang on to my career, but in November of 2020 I anchored my last newscast. These days I am busier than ever! With a more flexible schedule and working from home some days, I’ve actually been able to do more. I work full time in communications for Navarro Research and Engineering. I am a contractor to the United States Department of Energy (DOE). I get to cover stories about nuclear, environmental, and medical issues. It’s so cool! I launched DOE’s first newscast. I also teach journalism at the University of Tennessee. I’m a producer on a true crime documentary and travel for shoots every now and then. I also make appearances as a journalist on a true crime TV show called Fatal Attraction. I’m grateful to continue my advocacy and awareness efforts online through Facebook, TikTok, Instagram and YouTube. I run those accounts with more than 130,000 wonderful followers.
AJ: What do you want the public to know about dysautonomia and those living with it?
SD: Dysautonomia is an autonomic nervous system (ANS) disorder. Your ANS controls everything in your body you don’t think about. Think auto, like automatic. Some of the responsibilities of your ANS are pupil dilation, digestion, heart rate, blood pressure and temperature regulation. Imagine if that system broke. Everything in your body malfunctions when this system isn’t working properly, so the symptoms are widespread. Some patients notice very mild symptoms, while others are so disabled they can’t work or attend school. According to Dysautonomia International, more than 1/3 of these patients are that severe.
Getting upright is very difficult for many patients with my form of dysautonomia. With my version, POTS, when I try to get my body upright, all systems malfunction due to the autonomic dysregulation. That means first thing in the morning when I get out of bed, my symptoms are usually worst. Sometimes I throw up. I am always very lightheaded and wobbly. I have trouble breathing and my vision goes in and out. I’ll begin to experience tremors and tend to overheat and sweat profusely before then freezing later in the day. I often have memory trouble and can’t retain information like normal. The neurological side of this can be quite disabling.
I wish people knew that this condition is not rare, it was just poorly researched for a very long time and many doctors didn’t know about it. For this reason, there is still an intense stigma surrounding POTS. Some doctors have damaging misconceptions about it. For instance, they may be under the impression it is simply an inconvenience causing occasional lightheadedness. Others have never heard of it and wouldn’t be able to diagnose it, leading to lengthy diagnostic delays for very sick patients. I wish people knew that this condition is ripping away futures from millions of people, leaving them without significant treatment options and often bedridden in the primes of their lives.
I also wish people knew this happens to otherwise healthy people. It is often triggered by a virus or physical trauma, like surgery. Healthy, active people are waking up one day with wretched symptoms that never go away. This isn’t just a POTS people problem. This is a public health problem with an economic impact. We saw POTS cases rise with COVID-19. This wasn’t surprising to those of us already suffering from the condition and our doctors who knew what was coming. Anyone can develop POTS after having a virus like mono, the flu or COVID. This will continue to devastate lives and displace people from the workforce until better treatments or a cure are found.
AJ: How has living with dysautonomia affected how you travel, even locally?
SD: This question makes me so sad. Aside from my career, of all the things chronic illness has impacted most, it is my ability to travel. When my husband and I were dating, we would go on little weekend trips constantly. We did a lot of quick driving destinations, but loved it! We’d take our two small dogs with us. These days we travel much less often.
I get tired so easily. It’s also difficult to make plans when I just don’t know how I’ll feel each day. That means traveling is tough to plan. When we do travel, we make almost no plans for the time we are in the location. For instance, we planned a two week honeymoon to Switzerland and Italy. We made almost no plans for the trip other than flights and hotel bookings. We didn’t even make any restaurant reservations. We decided to play it by ear since my condition is so unpredictable. While this is frustrating, it is oddly freeing, too. No pressure when we travel! Just enjoy what we can when we feel like it! No schedule. No expectations. Just living in the moment – if it’s a good one.
I don’t grocery shop anymore. I use Instacart. When you’re managing a chronic illness the number one tool is learning where to spend your limited energy. I am simply not going to waste my precious energy shopping for dinner ingredients. It’s worth budgeting for delivery costs when it means I get to enjoy something more important.
One of the activities I miss most since becoming chronically ill is window shopping with my dog. It probably sounds so silly, but I used to love wandering along a cute strip of boutiques in some small town somewhere with my puppy, Sundae. I can’t do that anymore comfortably.
AJ: How can the travel and tourism industry, or venues better assist those living with dysautonomia or other chronic illnesses?
SD: One of the most difficult parts of travel for me is standing in lines. The waiting to get through security, on trains or on planes, makes my symptoms worse if I have to stand and my blood pools in my feet or I can’t find a place to sit that doesn’t hurt my back. I love San Jose International Airport in California. They have the Sunflower Program. You can ask for a lanyard that you wear to indicate you have an invisible disability. That way, if you use the designated seating areas or ask for wheelchair service, you don’t feel judged. It’s such a relief to simply know that their staff is trained to understand not all disabilities are visible. I wish more places adopted that training and program.
Connect with Summer on her website www.SummerDashe.com
Look out for Part Two of the interview, in our next issue.