When a Doctor Suggested I Just 'See the Psychiatrist Down the Hall'
I recently went to interview a new specialist to add to my already long list of specialists.
The way the current medical model is set up, doctors look at the sum of your parts instead of the whole when you have a chronic illness like an autoimmune disease. Since there is no specialty for autoimmune disease, I go to the person that specializes in part of the body that houses that particular disease.
I have myasthenia gravis, a neuromuscular disease. This means that I would see a neurologist. Because of complications from myasthenia, I also see an endocrinologist, internist, oncologist, rheumatologist, and an infectious disease doctor. I also need my normal gynecologist, dentist and dermatologist to round out my team.
Unfortunately, when you are seeing this many specialists, you may be limited in the options for candidates. Some cities are lucky to have one doctor that practices the specialty you need. You hope for the best, but have to accept what comes.
I had high hopes for this particular specialist. He was supposed to be an expert in my disease and had written many papers on it. I was hoping he could bring me some relief as I had been feeling very weak lately.
After filling out detailed paperwork, I waited almost two hours for the appointment that took me six months to get. Since long waits are common with specialists, I brought a book and some snacks.
Once in the patient’s room, I was told to undress and put on a paper gown. The room was freezing. When I asked if there was any way to turn the air conditioning down, the nurse said the doctor likes it cold and they aren’t allowed to touch the thermostat. As the cold sunk deep in my bones, I started to shiver.
It was another 45 minutes before a man in a while lab coat walked in looking at my chart. He briefly looked up, then started talking.
You typically answer a lot of questions when you have a chronic disease. I couldn’t believe the one this doctor asked.
Doctor: I see here it says you have myasthenia gravis, but you passed the breathing test and the physical exertion test.
Me: Yes. I’m stronger in the morning and I just took my medication.
Doctor: But you don’t appear to be having a problem, so why are you here?
Me: Because by the end of the day I look and feel much different. It’s hard for me to breathe later and by dinner time I can’t swallow so I am not able to eat.
Doctor: Then just eat earlier.
Me: Excuse me? So your saying to have dinner by 3:00 in the afternoon and I’ll be good?
Doctor: (laughing) Sure. You can get in on the “Early Bird Specials” with the senior citizens.
Me: And what about the breathing?
Doctor: Look. You don’t want this disease. It’s a terrible disease. If you really had it, you would be weak and have trouble walking. You would also be having trouble talking and it would only get worse until you where in a wheelchair or needing assistance with a ventilator in the hospital. I see you have kids. Maybe you’re just tired and a little stressed out. Why don’t I send you to see the psychiatrist down the hall and you two can chat about some medication to make you more relaxed.
Me: Are you saying you think I am making my symptoms up? You do see in my file that I’ve tested positive for myasthenia gravis right?
Doctor: Yes, but they can be wrong. I get a lot of women in here looking for attention. Most of them think they have something because they Googled it.
Me: I had an IV tensilon test from an ocular-neurologist. He confirmed my diagnosis. I’m not just tired, I’m sick.
Doctor: Look, honey, you don’t want this disease. It’s a terrible one. Go home and get some rest and I’m sure you will feel better. I’ll have the front office manager get you the name of the shrink if you want to talk to someone.
All I could do is watch with my mouth open as he pivoted around to leave.
Why couldn’t he see how physically sick I was?
Why didn’t he believe me?
How could a doctor that took an oath to ‘do no harm’ be so harmful?
The current medical system is a complicated forum to navigate. Doctors are overworked and underpaid by insurance companies that only want to approve the most basic of tests and appointments. Still, there is no excuse for dismissive behavior.
I asked a physician I met at a conference recently how he handled the emotional blow his patients felt after hearing the life-changing news of a chronic or rare diagnosis. He looked confused.
“What do you mean?” He asked. “If they have emotional issues, I send them to a therapist to get on some medication.”
I wondered when doctors forgot how to be compassionate to their patients.
It is time to shift our thinking from treating the disease to treating the patient.
To the doctor who forgot how to be compassionate, I would suggest you remember that one day it could be your mother, daughter or even yourself sitting in a paper gown, scared and alone.
I would also recommend you keep in mind that each of your patients is someone’s mother, child, or sister.
Doctors step into your life in your darkest hour. Remembering to smile and extend a little compassion could set you up to handle this next phase of your life. It will also give you hope that someone is on your side so you this figure this out together.