When a 15-year old girl tells us that her concerns need to be heard by her doctors and other medical practitioners, we all need to listen.
Susan F was unwillingly thrust into the world of metastatic breast cancer after a routine mammogram in 2012. She uses her powers of persuasion, knowledge and writing for good in hopes of helping others similarly affected. She is a patient advocate, volunteering with METAvivor (metavivor.org), a volunteer organization raising funds for research in metastatic breast cancer.
A fiesty 15-year old has posted a video on YouTube expressing her frustration during her multi-day stay at a hospital, unable to sleep due to repeated visits by multiple doctors, and being ignored by those doctors as they discussed her case with only her parents. In the week it was first posted, I am the patient, I need to be heard
, was viewed almost 30,000 times. Her video received such attention that it has inspired blogs (like mine), an article in Forbes
, and multiple shares across multiple multimedia platforms.
Ms. Gleason has spoken for every patient everywhere.
"I am the patient, I need to be heard,"is the mantra, battle cry, prayer of anyone who has been forced to enter a doctor's office or hospital over and over again. Listen to me. I am right here. This is my life. My body. My future. I get to decide what you do to me, put into me, perform on me, especially if it will lead to a substantially decreased quality of life. I am not here to bulk up your survival statistics, you taking credit for keeping patients alive just to keep patients alive. I come to you because I want to live, and I want to live well. I deserve to be heard when I tell you that the chemo numbs my hands and feet so severely that I cannot walk. I deserve to be listened to when I say the steroids push me into a mania that impedes my life. And I deserve modified treatments based on my very real concerns.
Do you get the idea that I've been feeling this frustration too? I have. From the oncologist who would not sign off on a double mastectomy because the cancer had already spread and, really, the breasts (and their continued ability to grow more cancer) were not her primary concern. To the nurse practitioner in that oncology practice who blithely repeats the symptoms of cancer metastases, continuously reminding me of my impending death, so that I am encouraged to obsess on even the smallest headache as yet another proof of cancer gone even more bad. And to that same nurse oncologist who dismissively told me to go ahead and take that glutamine while on blood thinners, not researching glutamine's blood-thinning properties. The resultant bloody noses were only a sidelight of my already cancer-riddled fears, and her unwillingness to work with me in finding appropriate neuropathy-reducing supplements only added frustation to me already-heightened fears.
Thankfully, my oncologist finally did listen to me regarding my concerns about a mastectomy, and I had the procedure two years ago. She understood that my continuing fear of a different primary cancer in my breast trumped the current practice of stage 4, no surgery. My mental health was important to her in my fight for health, and I respect her acknowledging that.
But to the medical practitioners who don't listen to my needs, who treat me as just another case or dismiss me as a simple note in a patient intake file, I have a new phrase for you. "You're fired."
Yeah. That's right. That’s you, nurse practitioner, whom I have lovingly nicknamed Hitler in Heels for her penchant of rigidly following the rules, no matter how much my case may demand a flexible approach. I'm talking about that time I came to you with steroid-induced acne literally covering my entire forehead, and you insisted I see a dermatologist, scheduling me two weeks out for that appointment, when the simple solution was a prescription of anti-acne cream--props to my Internist for calling that prescription in to the pharmacy instead. I don't need to fight with you to get the kind of care I deserve and need. I don't need to be pushed into yet another medical appointment when I am already exhausted by extensive chemo, and you could easily have written the prescription instead. I don't need to be constantly reminded of the ways I could die. I've looked the symptoms of brain metastases up. We went over the sypmtoms already. I know the gig.
So Hitler in Heels, you are fired. Done. Kaput. I will find another medical professional who will listen to me, respect my concerns, approach me with flexibility, and pay attention to my desire to live comfortably, rather than just to live. You. Are. Fired. Got it?
Because, as feisty Ms. Morgan Gleason, said it "I am the patient, I need to be heard." And, frankly, I am the one signing your paycheck. My body pays your bills. So beat it, woman. Take your pink slip, and walk out the door.
And to every medical practitioner out there, listen up. Because your patients are talking. And we need to be heard.