I No Longer Feel Guilty About Going to the ER

One frustrating aspect of Ehlers-Danlos syndrome (EDS) is the number of systems it can affect and the multiple disorders it can mimic.

I say “can” because everyone experiences EDS differently due to genetic penetrance and expressivity. Reduced penetrance (not developing features of the disorder) and variable expressivity (the different signs and symptoms that people with the same disorder present) can make diagnosis difficult.

EDS symptoms may mimic serious problems. Chest pain, for example, calls for an urgent evaluation for emergent problems, such as a heart attack, pulmonary embolism, or aortic dissection. I have gone to the emergency room for such work-ups several times in the past 35 years, and every time, the work-up has been negative for any serious, emergent conditions.

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I have often felt embarrassed for receiving “unnecessary” medical attention, usually after the attending physician announced that nothing was wrong and moved on to treating someone else. I never wanted there to be an emergency. I wanted doctors to determine the cause of my pain so it could be fixed. I didn’t want to neglect the obvious signs of a problem and end up with a more severe problem, or worse, die.

Being told that there is no heart attack, pulmonary embolism, or aortic dissection should be reassuring. But more often than not, this message of reassurance was lost in the busyness of the emergency room. Instead, I faced uncertainty — if it’s not this, then what is it? — and shame because I lacked validation for feeling so unwell.

Over the years, follow-up appointments with my primary caregivers and the specialists to whom they referred me have yielded varied diagnoses, such as bronchial spasms and asthma, supraventricular tachycardia, postural orthostatic tachycardia syndrome, dehydration, costochondritis, and pleurisy.

The growing list of differential diagnoses, and the negative feelings associated with nondiagnostic emergency room visits, have made me more reluctant to visit the ER for chest pain.

A recent trip to the ER

Recently, I experienced some troubling chest pain and shortness of breath. It presented differently than before, lasted longer, and wasn’t accompanied by the other symptoms that usually go with my known diagnoses. I was reluctant to go to the emergency room for fear that it would, once again, be labeled “nothing.” This was despite a nurse assuring me during a previous ER visit that it was wise to get checked out. I was not a “frequent flyer,” she insisted, which is often used as a derogatory term.

Despite my vaccination status, I also had to consider the minor possibility of exposure to COVID-19, although I had taken many precautions.

I decided to visit the urgent care clinic affiliated with my primary care clinic. They quickly reviewed my symptoms and my reasons for not going to the ER straight away, and sent me to the emergency room for an immediate work-up. They called ahead to ensure that emergency room staff would be prepared.

Same results, different outcome

Once in the ER, I found myself in a swirl of emotions and activity.

“You look really anxious,” one staff member remarked.

“I am,” I replied. “I’m in here with all this going on!”

The attending nurses, medical assistants, and nurse practitioner were wonderful. Not only did they treat me respectfully, but also they gave me an overview of what they would be doing. Most importantly, they clarified that they would be checking for specific things they could treat. If none turned up, it didn’t mean I didn’t need treatment, just that they couldn’t provide it.

Although I already knew this cognitively, hearing it from ER staff felt vastly different and reassuring. It changed how I processed the event emotionally.

The tests were negative, and I was discharged. But this time, I was relieved, and didn’t feel embarrassed or guilty. Having ER staff rule out certain issues was helpful to my primary care physician during a follow-up visit.

So many things can go wrong with health. Having EDS may or may not increase the risk of adverse medical events, but it certainly does not exempt one from them. If you are in a similar position, try assuming that ER staff share the same perspective as you do. Don’t let the fear of being embarrassed by negative results keep you from going when you have troubling symptoms.

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Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.