I recently went to interview a new specialist to add to my already long list of specialist.
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 speciality 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 neuro-muscular disease. This means that I would see a neurologist. Because of complications from Myasthenia, I also see an endocrinologist, internist, oncologist, rheumatologist, and a infectious disease doctor. I also need my normal gynecologist, dentist and dermatologist to round out my team.
I’m one of the lucky ones. I was talking to a friend the other day who told me she takes her son to see over a dozen different medical professionals for his particular issue. She had to quit her job so she could drive him to all of his appointments.
Unfortunately, when you are seeing that many specialist, you may be limited in the options for candidates. Some cities are lucky to have one doctor that practices the specialty you need. When this happens it’s sort of like an arranged marriage. 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.
As I walked into the waiting room, I noticed tattered chairs pushed awkwardly against the walls with an oversized table in the middle. I thought it odd that the room was so cramped since many with my disease are in wheel chairs. That must be why I saw a few folks in chairs waiting in the hallway.
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 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 your 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.
How could he not see how 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. Unfortunately, with all the people getting sick, it is only getting worse. Still, there is no excuse for dismissive behavior.
September 24-30 is Invisible Illness Awareness Week. Today, there are more people with a rare disease then those with cancer and AIDS combined and 50% of everyone on the planet will have a chronic illness or chronic pain in their lifetime.
We have become a global population of sickness cared for by doctors that need to start caring.
I was at a conference speaking to a physician the other day who told me his primary function was that of a scientist. He said his job was to decipher and organize the data his patients where giving him to determine the proper diagnosis. He liked his particular speciality because it kept him interested and he found family medicine boring.
When I asked him how he handled the emotional blow his patients felt after hearing news that life as they knew it was over when they got a diagnosis of a chronic illness, 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 remembered when I was little. We had an old school doctor in our town that would sit and hold my mother’s hand and listen to her explain her daughters symptoms. They would try to come up with a plan together so I would stop getting infection after infection. I also remember the warm tone of his voice when he spoke with me. It made me feel like he really cared about me and I wanted to feel better from him as much as for myself.
I wondered when doctors forgot how to be compassionate to their patients.
I fully understand how frustrating the medical system is for the doctor as well as the patient. I also think that if you can’t handle remembering how to be compassionate within the current medical model, then you should go into research where you don’t have to talk to people.
Half of the world will have some sort of medial condition in their lifetime. That means if you don’t have one, someone you love will if they don’t already. I think that accepting the current standard of care is unacceptable.
Although there are many practicing doctors that still know how to be compassionate, there are more that would prefer to see the science before the person.
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 someones mother, child, or sister.
Finally, if you don’t have the capacity to be compassionate, find another line of work. Having heath issues can be terrifying and confusing and part of your job is to reassure your patients that you have their backs.
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.