From Hyde to Jekyll: Finding a Doctor Who LISTENED
Doctor Hyde: Dismissed and Disbelieved
“I’ll be perfectly honest with you, ma’am,” the ER attending was telling me. “Under ordinary circumstances, we’d admit you for testing — there’s definitely something going on with you — but we’re being told to keep as many beds open as we can, and it’s probably safer for you at home right now.”
It was March 2020, and the hospital was preparing itself for an influx of patients with a scary, pneumonia-like illness that spread all the way from Wuhan, China. Little did the medical profession know they couldn’t prepare enough; little did I know that I’d be suffering from my own mystery illness for the next nine months.
I’d gone to the ER that March day because I hadn’t been able to reliably keep food down for weeks. I’d started to lose weight, and weight loss — especially without trying — was something that had not come easily to me in my entire fifty-mumble years on the planet.
On top of the weight loss, I had constant, persistent, sharp pain in my stomach region, urgent diarrhea, nausea, and weekly vomiting. I was existing on oatmeal, rice, mashed potatoes, water, and bananas. I called Dr. K, who’d been our family doctor for about ten years, and asked the receptionist for a callback from the doctor.
I was dreading the callback before it happened, because I already knew Dr. K was not going to care.
At one point, Dr. K had been an excellent doctor. Then, as I like to describe it, he “went Hollywood”. First, it was sleep medicine. Suddenly, everyone needed a sleep evaluation and a CPAP. Then it was a “signature” weight-loss plan; he’d promised to sign me up for the sessions, but when I reminded him I’d need a gluten-free plan, I never heard from him again on that front. To make a years-long story short, what he really wanted was healthy patients who didn’t take up a lot of his time but spent a lot of money on his gimmicks.
The call, when it came, went exactly like I knew it would. I told him what had happened, what I’d been going through, and what the ER doctor had said. “I’m going to give you something stronger for your anxiety,” he told me. “And something to help you sleep at night.”
I remember bursting into tears on the phone. “It’s not anxiety! I’m sick! I sleep just fine.” I pleaded into the phone. “You always want to blame my weight, or my anxiety, and it’s not either of those things! The hospital wanted to admit me!”
I heard a sigh on the other end of the phone. I think I was taking up too much of his time. “You can either take the medication I’m prescribing, or there’s nothing else I can do to help you.”
In tears, I hung up.
It had been a long time coming. I’d been his patient for a decade. I’d known for a time I needed to find a new doctor — after he told me I was having anxiety attacks, when actually it turned out I had gallstones and needed surgery. After he got me hooked on Xanax and said it was my fault. Or when I was having severe side effects from one of my medications, and he refused to prescribe an alternative. I knew after he blamed my weight, my gender, or my anxiety for every symptom I brought to him.
But then…what if he was right? He’s the doctor. He has the medical training. It’s true that being overweight causes other health issues, just like it’s true that anxiety can exacerbate existing conditions. Despite all the physical evidence to the contrary, my traitorous brain got stuck in this crazy loop of “what if” and overrode my doubts. At least until this call, this final straw.
So now, I no longer had a family doctor, the world was burning, and I was still sick.
In desperation, I called my GI doctor and explained my symptoms. He suspected SIBO (small intestine bacterial overgrowth) and gave me a number at the hospital to call and schedule the test. There was only one small problem. Hospitals were not doing “non-essential” tests. But they’d call when they were.
While I waited for the test appointment that never came, I learned to function around the pain. I got out of bed for eight hours a day to work, and then I went right back to bed. Without my husband to make sure I was getting at least a little nutrition, inasmuch as I could keep anything down, things would have been so much worse.
Nine long months passed. I lost thirty more pounds. I saved a single photo of myself from that time. My skin had a gray tint, and it was loose on my face; I looked like a corpse. We lived in a weird world of rolling restrictions, masks, social distancing, and grief, but things were more open than they had been in the spring. Namely, doctors were accepting new patients.
I called one about ten minutes from our house and got in the next day.
Doctor Jekyll: Seen and Supported
I was sick, tired, and skeptical when I was shown into Dr. S’s exam room for the first time. I’d say my stomach was in knots, but honestly, I hurt so much I wouldn’t have known the difference. I honestly didn’t expect much; ten years of Dr. K had lowered my expectations dramatically, although that wasn’t something I consciously understood at the time.
Dr. S walked in and introduced himself in a voice that was, at once, both booming and gentle. He didn’t look at his computer. He looked at me over the top of his mask with the kindest eyes I’ve ever seen and said, “Tell me what’s going on.”
I started crying. He handed me a tissue. “Talk to me.” He didn’t sound annoyed or impatient, which is what I’d come to expect in a doctor.
So I talked, and talked some more. I took him through the last nine months. I showed him a picture of what I looked like before I got sick. I told him what Dr. K had said (and done, or not done) and what my GI doctor had said. When I finished, he went into action.
I left the office that day with a hug from Dr. S and a metronidazole prescription to treat SIBO. I was surprised he didn’t want to send me for the test I should have had nine months ago. “If it’s SIBO, it will heal you. If it’s not, it won’t hurt you. But it sounds like SIBO to me.”
And it was.
Two weeks later, I was feeling pretty damn good. The nausea and vomiting had passed. The pain was mostly gone, but for a lingering soreness. To this day, I am still furious that I had to suffer for nine months, and I never went back to the GI doctor who could have done the same thing Dr. S did.
Dr. S is what I like to call a good, old-fashioned family doctor. He’s one of a dying breed of physicians who care more about their patients’ well-being than they do about the almighty dollar. He doesn’t overbook appointments, so he always sees you on time. If you need an hour, you get an hour. He’s an active listener. He believes it’s important to know more about the people he treats than just their complaint du jour. He’s collaborative. He explains things in detail.
Never once in the following year was anxiety given as a potential reason for an illness, although we did discuss at length the impact anxiety can have on other health conditions. Nor did he hint at my weight being the cause. We did talk about my impediments to weight loss — the Hashimoto’s, primarily, but also the IBS, the GERD, and the celiac, and how inflammation and malabsorption affect metabolism. We discussed food and FODMAPs, and I felt like I finally had a plan. I never felt like I was being patronized.
Once, about three months after I first began seeing Dr. S, my phone rang. It was Dr. S. “I came across your file, and it made me think about how you’re doing.”
Yeah. He called to make sure I was still doing all right — for free.
the tl;dr — DON’T GIVE UP
tips for finding a doctor who listens
It’s not something I ever say out loud, but that nine months… well. If I hadn’t found Dr. S, I don’t honestly know if I’d be here today. I was in pain every minute of every day. I was barely sleeping. No one could help me. I truly believed the pain was my life, and that it would never go away. I was exhausted. I didn’t care about myself anymore. I was likely clinically depressed, or adjacent to it. I remember saying to my husband once, “It doesn’t hurt when I’m asleep. It’d be okay if I just stayed asleep.”
I wrote the previous paragraph in case you, the person reading this right now, are in the same place I was then. I promise you, good doctors exist. Don’t give up on yourself and on finding the right doctor for you. Instead:
Become your own advocate. This is the most important piece of advice I can give you, and it’s easier said than done.
Clearly state your concerns, symptoms, and needs.
Make a list of questions to bring with you so you don’t forget something.
Write down or record your appointments for future reference.
Ask for clarification each and every time you don’t understand what’s being said.
Bring a trusted person. A friend or family member can offer support during appointments and provide a second voice if needed.
Understand your options. Ask about the benefits and risks of treatments to enable you to make informed decisions.
Trust yourself. You know your own body best, so trust what you know about yourself. Your doctor has a medical degree, but he/she doesn’t live in your body. Your care should be collaborative, not dictatorial.
Research your condition(s). Learn about your health condition, symptoms, and potential treatments from reliable sources (like NIH, Harvard Health, or MedlinePlus in the US, or in the UK, the NHS, NICE, or patient.info) to enable informed conversations with your doctor.
Being heard doesn’t magically cure a chronic illness, but it changes everything about how you live with it. It restores dignity, trust, and hope. If you’ve struggled to find that kind of doctor, I’d love to hear your story in the comments. The more we share, the less alone we all feel.
