“No Good Deed Goes Unpunished”
These words, sent to me by one of my Sane People, one of my Voices of Reason, prevented me from getting really nasty with a parent of a child with IBD today.
A parent who, I am certain, is scared out of their mind, and wants only the best for their child.
But still, this is my page, and I will let myself process here, so that I may sleep tonight.
What I wanted to write, what I was screaming in my Private Voice Inside My Head, was something like this:
“I assume you are neither a nurse, nor a doctor. I certainly hope not, because I would genuinely fear for any person under your care.”
In my work as an Oncology Nurse Navigator, we are very open about advising people to be wary of advice they may read via Doctor Google. We provide extensive phone lists and website listings for reputable sites for patient education and support services.
We remind people that “Dr. Google” did not actually attend medical school.
I have spent years, literally years, trying to get medical doctors in Oregon and Washington to take the Specific Carbohydrate Diet (SCD) seriously. I have worked tirelessly, alongside parents of kids with IBD, and other adult IBD patents, trying to get the medical community to consider that diet, does in fact play a scientifically reasonable, Evidence-Based role in controlling IBD symptoms and disease progression.
I have also volunteered valuable vacation hours, and sacrificed precious time with my own family, to work as part of the medical staff for Camp Oasis, the CCFA’s medical camp for kids and teens with IBD.
I really don’t ask, or expect, anything in return. Except perhaps for a little respect. Respect for the fact that I went though 4 years of nursing school learning about the human body, disease processes, immunology, biology, pharmacology.
Then I was diagnosed with Crohn’s disease, I made GI education my next topic of education. I became an expert; yes… a goddamned expert. I went to multiple NDs, and GIs, and left no stone unturned.
Yes, I have studied fecal transplant, and Helminth Therapy, and Acupuncture, and Mindfulness, and have gone to bat with drug representatives from major pharmaceutical companies.
I am 46 years old, and don’t want myself on IV biologics or low-dose chemo any more than I want your 7 year old daughter, or someone else’s 12 year old son on a lifetime regimen of medications.
And I’m here to tell it to you straight: if you want your gastroenterologist, or your child’s pediatrician to take you seriously, and give serious thought and consideration to complementary therapies… think before you open your mouth. Don’t let fear be your guide. And put a little trust into those of us who dedicate our lives to health education.
Do your own research, sure. Ask questions. ABSOLUTELY. But please don’t blatantly disregard the research that has been done by people who have the knowledge, and who, YES, really do also want the best for you and your family member.