“So why do you need an echocardiogram?” asks the technician with perfectly curled eyelashes.
As this is my third echo, I’m accustomed to having to explain: “I have a heritable connective tissue disorder called hypermobile Ehlers Danlos Syndrome, so I have a slightly higher risk of aortic aneurysm.”
I don’t look like their typical patients, who are generally a few decades older and come with more frequently-seen diagnoses of atherosclerosis, congestive heart failure, or heart valve disease.
She doesn’t seem to be familiar with hEDS, but she raises her perfectly groomed brows at “aortic aneurysm,” so I’m hopeful that she knows what to look for.
In my case, regular echocardiograms are recommended because the effects of an aortic aneurysm can be catastrophic, so it is best to catch one early. Many people with hEDS will only need one echocardiogram to rule out aortic root issues, but a recent genetic test indicated I also have a risk of developing cardiomyopathy. Add that to the extra work my heart does living with postural orthostatic tachycardia syndrome (POTS) and my team thinks it is best that I revisit the echocardiogram experience routinely.
Since I’ve already had two that came back normal, I’m pretty sure that this one will be normal, but that doesn’t stop a small fearful part of me from showing up as a familiar tension. I’ve learned that this fearful part appreciates being acknowledged and comforted, which I choose to do on this occasion by imagining it as a scared child. I picture myself holding its hand, rubbing it’s back, and I offer to just be with it as we listen to the amazing “woosh-woosh” sounds of my heart coming from the fancy equipment that is checking in on my heart.
I wasn’t sure what to do with that fearful part during my previous echocardiograms. The second was done shortly after being diagnosed with hEDS and POTS, and my mind was preoccupied with a list of tests to be completed and specialists to see. Getting a diagnosis that has no cure felt like a threat to my well-being and sense of safety. The human brain goes into survival mode during times of threat, and mine was busy analyzing what had happened in the past (given this new information, was there more I could learn from my previous health issues?) and projecting possible problems into the future in an attempt to prepare myself for what may come. The negativity bias of the brain has evolved to make sure we don’t miss any potential threats and mine was on overdrive.
Survival mode was designed for life-threatening situations, but it doesn’t always serve us well as a long-term strategy. If the trigger is chronic, the human mind may stay in negativity bias, which makes for a pretty miserable existence as our minds keep highlighting possible problems while paying less attention to things that are going well. The threat-response physiology may become sensitized when threat is ongoing– essentially it gets even better at trying to keep you safe by lowering the threshold for what it takes to set off the threat/danger alarm and responding with a louder alarm. A sensitized threat-response system won’t necessarily recognize the difference between immediate life-threat (i.e. if my echo had been positive and I was rushed me off to emergency surgery) and possible threat (i.e. slightly higher risk of aortic aneurysm with a recommendation of regular monitoring.) In retrospect, my body was responding to the latter as if it was the former and my threat-protection mechanisms became more sensitive/sensitized as I panicked about what the double-diagnosis of hEDS and POTS might mean for my future.
My first echocardiogram occurred during PT school, after an esteemed professor noted that I was hypermobile and casually suggested that I should have my heart looked at to make sure that my aorta wasn’t overstretched and ready to burst like a balloon (those probably weren’t his exact words, but that is how it lodged in my hippocampus/memory.) Although our coverage of connective tissue disorders was limited to a few powerpoint slides, I knew he was referring to aortic aneurysm and the possibility of early death. So I set up an appointment with a cardiologist. When he asked what brought me in, I explained in a tone that I hoped didn’t sound too panicked (but probably did):
“I’m hypermobile and my professor thinks it might be affecting my heart so I need an echocardiogram to make sure I don’t have an aortic aneurysm.”
I wish I had a picture of his face at that moment, because it might be good for a laugh now. But not at that time– I was terrified that I might meet my demise while trying to memorize the human cardiovascular system (wouldn’t that be ironic?) In spite of any concerns he may have had about my sanity, he went ahead with the echo and when it came back “unremarkable” I went back to my sole focus of earning a doctorate in physical therapy. Distraction was the tool of choice in dealing with my fear at the time. And rationalization– “no need to be afraid, the echo came back negative. Glad that is over!”
Fear is a normal part of the human experience. It is a strong emotion that can feed into a physiological threat response. If it occurs as part of an acute life-threatening situation, it serves a useful purpose in ramping up the threat protection mechanisms that help us mobilize for action. Fight, flight, freeze, or fawn (try to pacify) a hungry-looking bear and the fear tends to naturally resolve when you’ve fought off, run away from, hidden from, or satisfied the bear’s needs with a cooler full of steaks (lucky you had those on hand!) But if the bear isn’t a bear at all and your sensitized system is reacting to unprocessed or ongoing fear, then these physiological shifts aren’t useful. In fact, the shift of resources away from things like digestion (unnecessary while running from a bear!) can cause new issues like chronic constipation. Blood flow to large skeletal muscles may help them tense up and prepare to run/fight, but if we don’t discharge that muscular energy by running/fighting, then we may live with a lingering sense of tension and dis-ease.
The autonomic nervous system plays a huge role in the threat response mechanisms, and for those with dysautonomia or POTS, this system is already dysfunctional. It may respond to perfectly harmless triggers in exaggerated or unexpected ways– like accelerating heart rate >120 beats per minute just getting up out of a chair.
I’ve learned over time that even though fear did not cause my hEDS or POTS, I do need to be able to regulate my emotional responses in order to prevent further dysfunction of my threat protection system. There are a lot of things about my physiology that I can’t control, but I can take steps to ensure that fear is addressed in ways that allow me to process and reconcile this normal human experience so that it doesn’t trigger unnecessary threat-protection mechanisms that generally make life more difficult.
So even if it sounds silly to the rational cognitive parts of my brain (and believe me, this has been a barrier along the way!) I anticipate by the time I need a 4th, 5th, or 6th echocardiogram I’ll be quite skilled at noticing the fear instead of trying to ignore it. I’ll hold it’s hand, rub it’s back, and ask it what it needs to feel more at ease. I’ll give it space to breathe and attend to it in whatever ways are needed for my inner physiology to shift from fear-warning-danger to safety and calm.
What are some of the ways that you self-regulate your own inner physiology? Things that work for some people have the opposite effect on others, so it is a very individualized process. For example, some people can do deep breathing and feel an inner calm, while others feel a sense of panic when they focus on their breath. If you aren’t sure, but feel you would benefit from exploring this further, you might consider the following resources:
For individualized guidance using the above techniques as well as somatic awareness and movement-based strategies, consider booking a health consult with Dr. Lewan.