A few weeks ago, the vision in my right eye became blurry. And, when I looked in the mirror the right pupil looked huge and dilated compared to the left eye. Did I panic and rush to the ER? Nope. I was overwhelmed by a crushing amount of guilt.
“How could I do this again?”
“I can’t believe I let this happen!”
“Everyone is going to be so upset with me!”
These are the thoughts that ran through my head. I googled it and every medical site urges you to go to the ER for sudden vision changes. It could be a sign of something serious, like a stroke, brain cancer or MS. But, I couldn’t talk myself into going and instead I waited three days to seek medical care.
I developed symptoms of Ehlers-Danlos syndrome when I was around 14 years old. However, they didn’t begin to become severe until I hit 21. Like others with EDS, I developed neuro symptoms which put me first into the ER and then into the care of a neurologist. Even though I had symptoms for years, it took my doctors another three to refer me to a geneticist who knew I was a zebra right away (apparently when you sublux your shoulder in their office with a loud crack they’ll get suspicious). After a full 10 years of displaying symptoms and having it since birth, I was finally given the correct diagnosis.
But, during those three years of searching (and occasionally during the previous 10) I was told over and over that I was a hypochondriac. That the things I was describing were impossible or didn’t add up. Many specialists suggested I see a psychiatrist, which I eventually did. I felt so ashamed. I felt like an attention-seeker, a faker, and someone who was wasting these professionals’ precious time. And, even when you receive the correct diagnosis, those feelings don’t fade overnight.
After three days of waiting, I did go to the ER. I was admitted to the hospital and it was determined that nothing life-threatening was causing my visual changes. I was released with good news. But, what if it was something serious? Those three days could have been critical for getting me the appropriate care. In the end, if I made myself sicker by waiting it would have hurt only me and not the doctors who could have potentially accused me of being a hypochondriac.
I urge anyone in a similar situation to listen to your gut. It’s easy to try and brush something off. But, oftentimes, getting treatment as soon as possible is critical to your health. And for those that still deal with feelings of shame for seeking care, you are not alone. It helps me to discuss my feelings with a therapist and we are actively partnering together to correct my self-talk.
Ideally, medical professionals will be educated on how this type of talk can damage their patients further. Even if someone’s issues turn out to be a mental health issue it doesn’t do the patient any good to feel that it’s shameful to have a psychological problem but it’s OK to have a physical issue.
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Author: Katherine Albrecht