We Can't Keep Leaving Chronically Ill Patients Alone to Coordinate Their Health Care

“Oh no,” I thought, “another birthday.” Little did I know I would receive a surprise birthday gift – shingles – a herpes zoster reactivation. “Just a virus,” but this one was a whopper.

I went from being more fit than people half my age and exercising every day, to needing two naps a day. The anti-viral medication reduced the symptoms, but not the fatigue. Based on otherwise normal bloodwork, my long-time conventional doctor was at a loss: she told me recovery from the debilitating fatigue will take time because, “You are just getting older.”

However, being both resilient and stubborn, I knew I had to find a better answer.

As an accomplished researcher, leader of panels on chronic disease management and listener to online health summits, I thought I would explore functional medicine. After all, how hard could this be? I could not have been more wrong.

Expectations Meet Reality

First, how do I go about finding the right fit in a functional practitioner? Since first visit prices ranged from $350 – $1,000, I tried to screen providers through email. Some didn’t want to be screened, others responded that they could not help my strange set of symptoms.

Frustrated with the search and eager to start my healing journey, I took a personal referral to a naturopath. I expected personal attention and empathy in return for my $350 investment, but I was wrong again. As I sat in the busy and noisy waiting room, listening to the staff complain, I had a “gut feeling” this wasn’t going to go well.

The appointment felt tense and rushed. As the doctor typed into her computer, she made little eye contact until I asked, “How long it will it take until I feel better?” and “Why do I need so many supplements?” She looked up from her typing with an indignant and defensive facial expression and told me, “You will have this for a long time. It could take years to recover.”

My instincts told me this was not the right fit, but part of me hoped she had the keys to recovery. Against my gut feeling, I bought the supplements and the lab tests and agreed to follow her program. With “bags” full of stuff: lab test kits, supplements and blood test orders, I was stymied. Overwhelmed, I read the written materials and found they read like a template cookbook. I began to feel like a cash cow rather than a person.

Holding on to the hope that these tests would reveal important information, I spent $900  ($350 for the first visit and $400 for tests and $150 for initial supplements) out of pocket, resenting that my insurance did not cover these treatments. Trying to save where I could meant getting the blood tests through my PPO. This would mean asking her to request the tests. Could I muster the emotional energy to “spill the beans” with my conventional doc?

Not wanting to be confrontational, yet hoping to elicit my doctor’s support and cooperation, I wondered, “Should I ask her directly or wait for her to volunteer the blood tests?” Even though I rehearsed my pitch, in the office my heart was racing. I was surprised by how much “fear” of rejection I had.

Finally, my doctor looked me in the eye and said, “As a scientist, I do not believe in approaches without scientific evidence. Whatever you do, don’t let them play with your hormones.” In the end, I was pleasantly surprised that she gave me a lab request for the blood tests.

But I had been warned. Bad things could happen if I dared to step out of established thinking. As a patient, I felt abandoned and unsupported. As a medical professional, I was outraged that the patient was left to select and manage her own care.

It seemed no one really wanted to help me, yet they were all willing to take my money.

Curious and confused about the flood of food allergy and cortisol testing after my blood tests, the scientist in me wanted to know how the tests were calibrated and how normal ranges were determined. I called each of the testing labs: Meridian, Immuno Labs and Neuro Lab to gain scientific rigor, but alas there was very little, and each company claimed that theirs was the best. 

And what’s with all these supplements? Even the “physician grade” supplements have many options. How can you tell one brand from another? Why are there so many private labels? As I dug deeper into all things functional, I found myself increasingly alone in this journey to heal myself.

Knowing my journey was going to be long and disappointing, I needed to be engaged with someone who was empathetic and sympathetic. So, I had to face a difficult decision. Should I flush the $1,200 that I had invested in my first functional medicine doc down the drain and try another? The answer is yes. 

An Uncomfortable Second Ask

As my new functional doc demanded new blood tests, I had to grudgingly admit the failure of my first experiment to my conventional doc. At the clinic, I got her “I told you so” look, and a reluctant “OK.” On the one hand, I should have felt triumphant for taking charge of my health, yet I left feeling dejected.

On top of the blood tests, the new functional doc gave me different vitamins. Going against my conventional doc’s warning still ringing in my ears, “Don’t let them play with your hormones,” I warily added compounded hormones to the mix.

Trying to Help Myself Was a Costly, Emotional Rollercoaster

The good news is that with the latest mix of supplements, creams and diet restrictions, I am feeling better. The bad news is that I discovered health care for chronic disease patients is like fending for yourself in the Wild West.

Without collaboration and a supportive system, I felt abandoned and left alone to make difficult decisions about costly treatments. I yearned for an “expert” to help me, but quickly realized that I had to be my own expert.

I was mediating conversations between my conventional and functional medical providers — conversations I think should have happened without me. I was looking for a care team, and found only siloed practitioners speaking different medical languages.

If we hope to move beyond the hype about patient-centered care, a needed step is learning to speak the language of collaboration and coordination, or at least to find a good translator.

Any takers?

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

Follow this journey on DrBonnie360.

We want to hear your story. Become a Mighty contributor here.

Lead photo by Thinkstock Images