Hot Potato
“You are never coming back here,” Dimitri growled as we stepped into the elevator.
It was the first time I brought a partner with me to a big doctor’s appointment. I tried to warn him before. My specialists aren’t like physicians or dermatologists. They’re not going to make themselves available, get back to you quickly, or ask about your day. They sometimes lack bedside manner, and they don’t stay long. They’re brilliant and in high demand, and they know it. You’ll most likely walk out feeling more confused than you did going in and then get smacked with a huge bill for it as you leave. This has been my experience, at least.
My neurologist has a strong CV. She specializes in muscular dystrophy (pretty general, but we take what we can get) and is looped into the same medical system as all my other doctors, PTs, and specialists. When it comes to general maintenance and prescription refills around my muscle disease, she’s been fine. And when you have a disease with no cure, “fine” is really all you need.
But lately, things have been different. My LGMD has made a new friend. A mysterious, autoimmune friend that flares when my LGMD does and pops in and out as it pleases. It’s a smattering of different symptoms: hair loss in patches, numbness and tingling, rashes, eye inflammation, bruising up and down my legs, and morning migraines. The only thing consistent about it is its inconsistency—leaving me constantly on edge. My body has turned into a haunted house. I’ve seen two rheumatologists and two dermatologists for these weird symptoms, all of which pointed me back to my neurologist, especially when I began experiencing the latest one: debilitating nerve pain. So I called.
“Sorry, she isn’t available. Your symptoms are troubling though, especially since it’s near your chest. We want you to go to the ER. We’ll send her a message and mark it as urgent,” said the nurse flatly.
“I already sent her a message about it two days ago. This has been going on for a week, but it’s been spreading. Do you know when she will get back to me?”
“No. Just go to the ER.”
“Can I see a different neurologist? Anyone?”
“No. You aren’t allowed to see anyone here besides your current neurologist.”
Click.
I’ve never experienced nerve pain before. The feeling of my hair touching my shoulder made me gasp. Dimitri couldn’t put his arm around me, and I struggled to even wear clothing. I couldn’t sleep and couldn’t focus on anything. It had spread from a tiny half-inch section under my arm to half of my back and across my chest within one week. I was scared, so I logged off work and did as they said. I went to the ER.
A zillion blood tests, a chest x-ray, an ECG, a fun little dose of morphine, and a $500 bill later, the ER doctor looked at me and shrugged. He diagnosed it as general neuropathy, prescribed me some pain medication to tide me over, and ordered me to go straight to the neurologist within the next two days. When I got home, I called my neurologist again. Silence. I messaged her through the portal. Silence.
When I finally heard back at the end of that week, she offered to fit me in on July 17. That was 15 days away. The sense of urgency was lacking, but I took the appointment. The nerve pain continued as I waited and suffered. Waited and suffered. Waited and suffered.
Appointment day rolled around, and I had more anxiety than ever before. I was having nightmares about it. My intuition knew. But I put on my big girl pants, grabbed my medical binder, and walked through the double doors of the neurology department.
I can’t begin to list all of the things that went wrong during that appointment. But I’ll start with the fact that she wasn’t even there for the first half of it. She sent in a resident to take down notes of every symptom I was having. By the time she entered the room, she barely gave his notes a once-over, looked at me, and said, “Go to the rheumatologist…?”
I inhaled deeply.
I showed her my photo album of symptoms. I showed her my medical binder with all my bloodwork and notes from the rheumatologists I’d already seen. She told me my issues weren’t her area.
“Then what’s next?”
She literally shrugged.
My mom (who was on speakerphone) began to ask her about some of the incredibly groundbreaking research going on in the world of muscular dystrophy right now. If your life is affected by it, or your career is fueled by it, you know about it. And she wasn’t familiar with it. Moreover, despite how promising it all actually is for patients like me, she told me “not to have hope” and that “often these things don’t work out.” I’m mentally in a good place right now. But if she said that to me in 2021, I honestly don’t know if I’d be here today. She wasn’t checked in at all. She was one foot out the door the entire appointment. I could go on, but I think you get the idea. I left defeated.
This has been my life for the past year:
Physician: Your ANA is positive. This is an autoimmune thing. Go to a rheumatologist.
Rheumatologist: This is a skin thing. Go to a dermatologist.
Dermatologist: This is not a skin thing, it’s a nerve thing. Go to a neurologist.
Neurologist: This is not a nerve thing, it’s an autoimmune thing. Go to a rheumatologist.
I wonder if these doctors realize they are playing a game of Hot Potato with my health. No answers. Just thousands of dollars in medical bills and more referrals. I’ve written every post on this page for those with chronic illnesses. But this one—this one is for the doctors.
My body is my home. My home is burning down. The fire department is telling me to call the police. The police are telling me to call the city. The city is telling me to call the fire department. . . and around we go. The house is still burning, and nobody’s moving. In reality, I need the fire department, police, and the city. Who started the fire? How can we put it out? How can we repair the damages? I may not have a medical degree, but I know that everything in my body is connected, while all of my doctors are siloed—with no curiosity toward one another’s area of specialty.
If you’re reading this and you’re in the medical field, I have 3 asks:
Please be curious about areas that aren’t yours. I’m not asking you to be an expert. I’m just asking you not to hot potato me over to the next person because you won’t explore connections between your areas. Keep exploring.
I’m not just the 9:30 AM appointment. Please remember I’m a person who is struggling and looking to you for help. And I’m paying a lot of money for it too. Please give me the attention I deserve.
Please don’t call “dibs” on me as a patient. Let me see anyone I choose and anyone who can help. If there’s someone else who fits my needs better, why do I need to be handcuffed to the first specialist I visit? It puts professional wants over patient needs, and that’s a violation of the Hippocratic Oath you took.
Sincerely,
Patients everywhere.
