5 stages of grief when you have a chronic illness and your doctor breaks up with you
I’ve been seeing this particular neurologist for somewhere around a year when it happens. We’ve tried several medications to treat what we are still calling some form of chronic migraine (I will later be diagnosed with New Daily Persistent Headache). Nothing has worked. At this point, my constant, unremitting pain level has been a 5/10 for about a year and a half, with all kinds of other symptoms that make it worse. It’s frustrating for me and for him. But I’ve been hopeful that something will eventually work, so I keep making follow up appointments, trying everything he suggests. I’ve been vigilant. So, I’m not totally expecting what’s about to happen, even if I should be.
Then, he breaks up with me, and I go through the stages. You know the ones.
Stage one: Denial
We are sitting in his office. I do know that he’s been growing increasingly frustrated with the lack of progress in my situation. He has suggested a few other specialists, even a possible surgical procedure, all things that would send me elsewhere. I’ve certainly sensed a shift in his attitude toward me, my case. But I still want to believe he’ll have another brilliant idea. I look at all his degrees and certifications on the walls. My favorite is the certificate of completion of a headache fellowship at Mayo Clinic. Every time I see it, I think, “This guy knows his shit.” It’s been a comfort through months of pain. Today, he is somber. Unfeeling even, as he rolls his stool a little closer to where I’m sitting in a chair against the wall. He’s been silently reviewing my chart for a few minutes now. I shift in my chair. This silence is awkward, especially because his med student intern stands and stares at me from the corner. Finally, my doctor looks up from my chart and sighs. “I am completely out of ideas. We have literally gone through everything in the playbook.”
Stage two: Anger
The first thing I think is, I despise sports analogies. They are completely lost on me. I resent that this is how he chooses to phrase the reality of my predicament, as though my headache disorder is comparable to a bad football game. And, what is this playbook anyway? Who writes it? Is it his personally or is it the sacred playbook of neurologists everywhere and I am doomed across the board? I want to chastise him for giving up on me, for throwing in the towel. This is my quality of life we are discussing here, my everything. This is not a game.
I also think that I don’t like the way his medical student stares at me. There’s a light in his eye, a brightness, a buzzing energy like he is excited to be in the room with me, hearing about my intractable headache, my medical mystery. Maybe he hasn’t yet taken the course where they teach you about bedside manner.
Stage 3: Bargaining
“So, where do we go from here?” I ask.
I say “we” because I want to reassure myself that he’s still my doctor. That we are in this together. I’m testing him a little, I guess.
“I think you should see a neurosurgeon. I will pass her information along.”
Okay, I think. We’ve talked about the possibility of a neurostimulator before. So, I’ll go talk to this woman and then come back to him and tell him what she says.
“So, when should I schedule a follow up with you?”
“I suggest you just see how it goes with her first.”
Stage 4: Depression
So, there it is. The real breakup. He goes on to tell me that he just can’t do anything more for me in the same breath that he describes my “debilitating” headache, as though I’m not the one who’s living with it every single day. I want to cry. I almost do. I feel the tears welling up in my eyes, and I think of the face of a cartoon child, eyes filling with blue cartoon waves. What does that mean for me? My doctor is giving up. I must be hopeless. I want to crawl into my bed, pull the covers over my head, and never come out. But, I’m still in his office and he’s looking at me, and his medical student is looking me, and I have to at least make it to the waiting room and out to my car. So, I take a deep breath and thank him for his time. Then, I wait for the nurse to provide me with the proper referral information. Then, I make it to the parking lot. At this point, I’m too exhausted to cry.
Stage 5: Acceptance
On the drive home, I think, maybe he’s just an asshole. Maybe all doctors are assholes. It’s a requirement of the medical community. Too much knowledge, too much power over people’s lives. It’s bound to give you a complex. And his medical student, just an asshole in training, right? Then I think, maybe he thinks I’m an asshole, coming in with my list of questions inspired by articles found on WebMD and Mayo Clinic like I have any idea what I’m actually talking about. I throw around acquired medical jargon like it’s basic vocabulary. I am relentless in my desire for him to fix me, even after he tries everything he can think of, even after he doesn’t, he can’t. That can’t be easy for him, the disappointment on my face, the frustration in my voice after each failed treatment. It must be hard for him, looking me in the eyes and knowing he hasn’t helped me at all. It turns out that when it comes to this headache stuff, we’re all assholes and nobody wins. So I call to make an appointment with a new doctor, hopefully with new ideas and possibilities. All I can do is start again.