To the Doctors Who Put Band-Aids Over the Bullet Holes of My Rare Disease

Megan Marjorie
Doctor holding patient's hand, reassuring them
Doctor holding patient's hand, reassuring them

We go to doctors expecting answers, expecting treatments, expecting cures, expecting to be “fixed.” These people in the medical field become viewed as a step above human. Like someone who has this supernatural ability to make your bad health go away. And often, (especially when you have a chronic illness) you come to them with your broken heart in your hand (sometimes almost literally) and beg them to “fix you.” But sometimes, if you’re like me, that “fix” doesn’t come. With my complex medical history, for years after coming home from doctor’s appointments, I’ve pouted, I’ve cried and exclaimed with great frustration, “They are just putting Band-Aids over bullet holes!”

Some treatments have been life-changing, and life-saving. But primarily when I go to the doctor, it seems as though they know how to treat me just enough to keep me alive … but never know how to fix, resolve or at times, even alleviate the gaping bullet wound which is my rare disease. With my health decreasing, it feels as though almost weekly, I’m getting Band-Aids put over bullet holes that just keep on bleeding faster and faster. And I’ve found myself crying, looking to the heavens, complaining about all the “Band-Aids” and begging to just have the “bullet holes” fixed.

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But today, I had an odd moment of recollection. And I realized, I’d be dead without the “Band-Aids.” I’ve been so frustrated with my doctors who have seemed to only be keeping me alive and not resolving any of my issues, that I’ve forgotten to realize these humans (who are brave enough to take on a life-threatening rare disease patient with a complicated medical history) have been tirelessly working just to keep my body alive. They were trained to heal. They met someone who it seems as though can’t be healed. And it must drive them completely up a wall!

Despite all the ones who have pushed me to the wayside, and with a wave and a smile, have told me in not so many words, “Good luck kid, try not to die,” my team of doctors, no matter how frustrating my broken, incurable body may make them, continue to try. They continue to pour over my case. They continue to prescribe new meds, run new tests, answer endless questions and schedule emergency appointments.

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They continue to care.

Each and every “Band-Aid” I have been given has been meticulously placed by someone who would love nothing more than to sew up the bullet hole, all in the hopes I won’t “bleed out” until they discover how to do so. And thanks to them, and God, I haven’t “bled out” yet .

Believe me, I have seen some horrid doctors. But the ones who try, the ones who care, deserve a lot more recognition than what I have been giving them. I’m sure each of you (especially those with a chronic illness) have that doctor (or doctors) who has gone above and beyond for you. Give them a big old sincere, “Thank you.” I find they rarely get them, but man do they deserve them. And if any of my doctors are reading this, especially my primary care physician (PCP), I can’t thank you enough. I’m grateful for each and every “Band-Aid.”

Read more stories like this on The Mighty:

When Doctors Claim You’re Lying About Having a Medical Disorder

Why My Rare Condition Puts Me in a Complicated Relationship With My Legs

My Slow and Steady Path Forward With an Invisible Disability

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