Hospital mistakes stories: an open letter from an MS patient

"I’ll tell you, after 16 years of being a patient, I have story after story of being dismissed, being misdiagnosed, being treated rudely, and frankly, in some instances, being put in danger." Michelle | Photo Credit: ©URevolution

Dear [insert name of hospital here]:

At your hospital over the years, I’ve been accused of drug-seeking. I’ve been accused of malingering, a super fun term. I’ve been called, to my face, a frequent flyer. (Yes, patients know that term. It’s not cute. Tell your employees.)

But here’s the thing: I have an incurable disease.

The only thing I can do is try to slow it down.

It’s a disease that literally causes brain damage. It’s called multiple sclerosis or MS. You may have heard of it; in the United States, it’s the leading cause of neurological disability in young adults.

I’ve battled this disease, along with the bureaucratic, indifferent health systems, including your hospital, and the insurance companies, the pharmaceutical companies, and the pharmacies—every piece of the system—for 16 years. It’s exhausting.

From the start, I have endured a lot of crap from your healthcare system. In fact, my hospital mistakes stories began I was initially misdiagnosed with a brain tumor in one of your ER rooms and sent to a surgeon to set up what would have been unnecessary brain surgery.

As patients, we’re told to advocate for ourselves. We’re told to be informed. We’re told to be engaged in our healthcare.  The part that’s left out is they only want you to do these things if you have an easily resolved health issue. Chronic illness? Mystery ailments? Drug-seeker. Faker. Hypochondriac.

What is a Frequent Flyer Patient? "A frequent flyer patient is a slang term for a patient who is admitted repeatedly to the same hospital for the same non-resolving cluster of symptoms."

If I become disabled to the point where I can’t work, then there will be those who accuse me of taking advantage of the system. If I continue to fight as hard as I can to stave off disability and slow down the progress of this disease, I’m a problem patient.

I’ll tell you, after 16 years of being a patient, I have hospital mistake story after story of being dismissed, being misdiagnosed, being treated rudely, and frankly, in some instances, being put in danger.

I have taken half-measures, so to speak, finding a different provider when able; using your existing communication channels to try to resolve issues; trying to nicely, politely, please if it isn’t bothering you too much, find out what you need from me on my end. I’m done with half-measures.

So, you call me a frequent flyer. Fine. Until they find a cure, I’m your huckleberry. And I’m riding first-class. See you on the next flight.