I’ve kinda been all over the place lately. I spent my first 3 nights away from N this past weekend. I had to go out and start attending to my dad’s house. (The sheer volume of mouse droppings on his countertops when I dragged myself in the door after an epically bad 8.5 hour drive assured me that the trip was necessary.) All three of the ButIf’s, not the least of which the littlest ButIf, have been sick off and on since at least November. The hubs and I, both still recovering from last month’s pneumonia diagnoses times 2, are struggling to identify our roles as parents, to find a schedule somewhere in this life that has absolutely refused to be scheduled. Dealing with orphanhood has also been weighing me down. Not just the obvious emotional toll, but also the medical bills, the calls to the estate lawyer, the drive to pick up the cremains, the arguments with water companies that expected his bill to be paid on time despite the fact that their customer died the day before his bill was due… I digress. But, finally, my health has also been a constant elephant in the room. I’m in pain a lot these days. Surely all the driving and the physical exertion at my dad’s house isn’t helping, but no 31 year old should hurt this much. Tingling hands, aching legs, the reemergence of the hip rash, weighing 10 pounds heavier at 9 months postpartum what I did the day I delivered, a back that causes constant, sleepless pain. Next week’s rheumatologist appointment can’t come soon enough.
But, as I circle the wagons in preparation for another battle with medical professionals (albeit one that I still have some respect for), it’s causing me to reflect on my experiences with the medical field. To put it simply, I’ve been failed just so many times. And the cause hasn’t really mattered. What unites my experiences navigating the medical diagnoses of infertility, repeat miscarriage, endometriosis, Hashimoto’s, PCOS, and my as of yet undiagnosed spondyloarthropathy is one thing – I’ve had some truly baffling responses lobbed at me. The college health center MD who, upon first suggesting PCOS as the reason for my missing menses, casually stated to 20-year-old me, “You’ll be infertile, but otherwise you’ll be fine.” The PCP who recommended a hobby and counseling would cure my uncontrollable and unexplainable weight gain. The OB/GYN nurse who spent 10 minutes badgering me to tell her exactly which prenatal vitamin I’d been taking, even though she knew that day’s appointment was the one at which I’d be told that I needed to terminate the suspected ectopic pregnancy I’d been carrying after 18 months of trying. The phlebotomist who offered to be my surrogate because, “I get knocked up whenever my husband looks at me!” The other OB/GYN who, upon learning I’d relocated to the area, was infertile, and was going to be pursuing more infertility treatments, kept talking to me about the REI in the big town up the road (apparently years of medical school and residency in the field of obstetrics didn’t dissuade her of the notion that one goes to a sporting goods store to treat infertility). The rheumatologist who told me she couldn’t help me until my disease had progressed to the point that I could no longer function. The common thread is the sheer WTF-ness of it all.
And, I’m not alone. That’s why I was happy to stumble upon the new blog You Need a New Doctor. There’s a few things that sharing these truly horrifying stories can do. They instill solidarity in those of us who have endured them, they let us know that (sadly) we are far from alone. They give us a chance to laugh (or cry) along with a community of fellow-travelers. They shame a system that has repeatedly failed us. They inspire us to help make the system change. They let external observers in on the dirty little secret that one person’s “unfortunate bad experience” is, in fact, an entire community’s burden. We can do better.
So, please check it out. And, while you’re there, check out my own submission about my third miscarriage – Thanks for the Jar?