By Donna Gregory Burch
I’ve been working remotely with a fibromyalgia specialist for the past nine months, and we had our final phone consult on Monday. My contract is up this month, and I won’t be renewing for another three months.
I think we’re both relieved.
Our phone calls had become more tense and uncomfortable over the past few months. At some point, it became evident to both of us that I was going to be THAT patient … that patient who isn’t getting better … that patient who isn’t going to be a success story.
My doctor likes to publish patient success stories on his website, and I’d read so many of these during our first months of working together, hopeful that one day my photo and story would encourage others, too.
But a couple of months ago, I started to feel sad and a little bit resentful when I received his weekly emails and read the stories of fibro patients who were recovering. I wondered again and again, “Why them? Why are they getting their life back and not me?”
I’d been a good patient. I’d followed doctor’s orders. I’d bought all of the expensive supplements and diligently taken them morning, noon and night like I was supposed to. I’d lost 40+ pounds. I’d given up gluten. I hadn’t had a doughnut - one of my favorite things in the world! - in months. I’d stopped eating pretty much anything that might cause inflammation. I had worked so hard at getting better.
And for a few months, it felt like I was making progress. My sleep was much improved. I had more energy.
But my fibromyalgia pain lingered. Some days it was better, but it was always still there.
At some point, I clicked the “unsubscribe” button on my doctor’s weekly emails because I just didn’t need another reminder that my longed-for recovery was stalled.
And then the questioning began. Every time my doctor and I had an appointment, I’d ask, “Is there anything else I can try? Do you have any suggestions?” Sometimes he’d recommend another supplement, or more often, he’d stutter and try to change the subject. After a few weeks of this, I finally figured out he was all out of answers, and we were just biding our time until my contract was over.
During one appointment, his frustration bubbled over as he said I needed to stop focusing so much on my pain. Yeah, let me try that as my legs ache like abscesses, and my feet burn like I’m walking on fire. I will just stop thinking about it…
(To be fair, he did preface his comment by saying, “Don’t take this the wrong way but …”)
Before I hired him, I spent several hours researching his practice and treatment protocol online. I didn’t find a single negative patient review, and I won’t be the patient to write one either. He’s helped me more than any other doctor I’ve worked with, but I’ll admit the progress I’ve made isn’t worth the 24 months of credit card payments I’ll be making to pay off his fees. Still, I’m grateful for any improvement.
During our final appointment earlier this week, I could hear it in his voice … I’d failed him. Our conversation felt like any number of breakups I’ve been through in my life. I kept rambling about “not giving up” and how I’ll “keep looking for answers,” but I could tell he just wanted to get off the phone. Mentally and emotionally, he’d already severed our doctor-patient relationship because I’m THAT patient … the one who brings down his success rate. He’d rather move on to the next patient on his schedule … one who might actually make a recovery. Instead, he’s listening to me - for the umpteenth time - ask, “Is there anything else I can try?”
And then he said it - what I’ve known he’s wanted to say for at least the past three months: “No, I think we’ve exhausted everything…”
There it is. He’s given up on me. It’s over.
My jaded husband says my doctor has been paid, and now he’s moving on to other patients. My hubby says my doctor doesn’t care about me at all. I don’t want to believe that’s true.
Just as his weekly newsletters were a continual reminder of me being an imperfect patient, I prefer to believe that my repeated complaints of pain are a reminder that he’s an imperfect healer … that his protocol doesn’t work for everyone.
Doctors want their patients to get better. They want to have the answers. They want to heal others. And yet there’s always THAT patient … that patient who does all the right things and still doesn’t get better … that patient who just doesn’t respond to treatment …and THAT patient just happens to be me.
So what now? I start over. I find another doctor…
I hope this one doesn’t give up.
Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and practical tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.