Hospital mistakes and missteps: an open letter from an MS patient
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Hospital mistakes and missteps
On behalf of the frequent flyers, this is an open letter from Michelle Raines to an (unnamed) hospital calling them out on just a few of the hospital mistakes and missteps they made over sixteen years of living with multiple sclerosis.
Dear [insert name of hospital here]:
At your hospital over the years, Iβve been accused of drug-seeking. Iβve been accused of malingering, a super fun term. Iβve been called, to my face, a frequent flyer. (Yes, patients know that term. Itβs not cute. Tell your employees.)
But hereβs the thing: I have an incurable disease. The only thing I can do is try to slow it down.
Itβs a disease that literally causes brain damage. Itβs calledΒ multiple sclerosisΒ or MS. You may have heard of it; in the United States, itβs the leading cause of neurological disability in young adults.
Iβve battled this disease, along with the bureaucratic, indifferent health systems, including your hospital, and the insurance companies, the pharmaceutical companies, and the pharmaciesβevery piece of the systemβfor 16 years. Itβs exhausting.
'All the hospital mistakes and missteps I experienced as an MS patient were exhausting.' @karaoke_k8CLICK TO TWEET
From the start, I have endured a lot of crap from your health care system. In fact, 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, weβre told to advocate for ourselves. Weβre told to be informed. Weβre told to be engaged in our healthcare.Β The part thatβs 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 Plyer 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.
Segenβs Dictionary
Β
If I become disabled to the point where I canβt 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, Iβm a problem patient.
Iβll 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.
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 isnβt bothering you too much, find out what you need from me on my end. Iβm done with half-measures.
So, you call me a frequent flyer. Fine. Until they find a cure, Iβm your huckleberry. And Iβm riding first-class. See you on the next flight.

Michelle Raines
Michelle Raines is currently working on her villain origin story. It starts with an MS diagnosis in a hospital in Texas. Her previous work has been published in r.kv.ry Quarterly Literary Journal, Burningword Literary Journal, and apt.
Caption:
"Iβll 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