WHEN YOU FINALLY FIND A DOCTOR...
WHEN YOU FINALLY FIND A DOCTOR WHO LISTENS *AND* KNOWS ABOUT YOUR CONDITION
I have a lot of friends I know who put off going to a doctor as long as they can. They try to “fix” ailments on their own to avoid the doctors. Either because of the costs or simply because they don’t look forward to being poked and prodded.
On the other hand, I also have friends who have health issues who have to go to the doctor no matter the state of their finances or the discomfort that comes with a health examination. These are the ones who discover just how inexperienced or apathetic some doctors can be, as well as how effective a knowledgeable physician and friendly environment speeds things along when searching for medical help.
Almost a year ago I started having severe swallowing issues. They stem from my Ehlers-Danlos syndrome (EDS) that makes my organs extra flexible as well as fragile in some cases. This means when I eat food, my muscles that are supposed to help move the food down through the digestive system don’t do anything at all. My food takes hours to go into my stomach and often I find myself doing everything I can to keep myself from vomiting it up. Because I have to take sleeping medication, I too often find myself waking up with vomit either in my mouth or unfortunately on my newly cleaned bed sheets. Not the most fun a 25-year-old can have at 6 in the morning, so I went in search of that elusive medical help that would make life easier to live.
My primary doctor referred me to this surgeon whose area of expertise is the digestive tract. After waiting in the waiting room for 30 minutes and then waiting in the exam room for an hour, he finally decided to come in. The appointment barely lasted seven minutes. As he walked in, he immediately gave me the impression of a couch barreling into battle on a football field. He started by asking me to explain what was going on.
“I am having issues swallowing and..” I barely begin explaining when he jumps in and immediately asks me to lift up my shirt.
Disturbed I look at my mom – -who was thankfully there — to see if it is a weird request, but she gives me a nod so I lift my shirt up over my stomach. He asks me to show where it hurts.
Of course, I point at my throat because that’s where I was beginning to have issues… which he would have known if he had let me talk at all.
“Hmmmm…” He said very confused with me. Immediately, he tells us of a few surgeries he can do. My mom and I were giving each other looks like, “Is he for real?”
My mom lectures him that I have EDS and so surgery is not an option. We had mentioned this at the start of the appointment, but it didn’t appear to click. He seems noncommittal and suggests an endoscopy “and then we can talk surgeries again.” He finishes and walks out of the room in a rush.
In unanimous agreement we decide to never have an appointment with him again. What a waste of time and energy to not be heard, listened to or even helped.
Next I am referred to a gastro physicians assistant.
I go into my appointment having to wait 45 minutes for the PA. I am concerned how this meeting will go as I am alone at this particular appointment.
The PA comes in and he is an older gentleman. He asks me to describe my symptoms and for the first time I feel relief that someone in this search for better living is willing to listen to me.
As I go on to detail the additions of misery caused by my constant gastro issues — including having my acid reflux rearing its head despite medications, and then onto other symptoms that come with my whole slew of 11 diagnoses — I can see his eyes getting bigger in a bit of a panic because of how complex my body and health conditions are.
After I finish he asks me more about my diagnoses and to go into more detail. I did appreciate his wanting to know more, but it made me very concerned that he didn’t have any background with my condition and didn’t seem to know how EDS could effect gastrointestinal problems.
As we talk I am having trouble understanding him. I can feel the happiness of being listened to dissipate and I know I will not be able to have another appointment with him. Not only is it vital to be able to understand each other, it is best if a doctor knows the patients conditions so they can best help them with previous experience instead of just winging it and using me as a guinea pig.
He ends the appointment with the go-to advice doctors give when they have absolutely no clue how to help you: Eat healthy, exercise, lose weight, get better sleep, etc.
Having heard this from every doctor I have had right before they dropped me as a patient, I know it is something they say just to feel like they actually have helped me. Brownie points for this PA though, because he actually made the suggestions in a polite manner and looking me in the eye instead of other doctors who ramble the advice out as quickly as possible and then walk out.
The PA did give me a suggestion about how to change up medicine intake so it was more effective (take one in the morning and the other medicine before dinner), a small comfort to my time spent expounding my uncomfortable slew of diagnoses. A few days after I found the advice did help my reflux, but still I continued to lose sleep from inability to swallow and waking up vomiting.
There was one other PA left. She was new, but at this point I was desperate for someone to help me. “It shouldn’t be this hard to be understood, listened to and actually helped. Especially when my parents and the insurance were paying exorbitantly for it!” I cried each night as my swallowing inability worsened.
I walk into the appointment and immediately was ushered into the exam room. A good sign all around! Within minutes the new PA walked into the room. She smiles and puts me right at ease when she tells me she has had many patients with Ehlers-Danlos before. Hallelujah! Looking at my previous endoscopy’s and video swallows she mentions how she knows surgery is not an option for me. Thank goodness!
“Your video swallow shows that your EDS is just so severe Tierra, I am sorry to say I know I am limited in how I can help you. I do have some people I can refer you to but they are in different states.”
Her honesty is so refreshing and even better is her knowledge with the levels of my EDS. She ups my medicine and even offers some procedures that will help us better understand where the trouble is stemming from so that then we can go from there.
One year later and though we have discovered that my Ehlers-Danlos syndrome is too severe to do anything other than medication, I have come to applaud this PA for not only her understanding and concern but her humor that makes my appointments less of a chore and more of a good experience all around.
After losing hope with the two previous physicians, she restored my faith in medical personnel and their ability to do their job in helping me live my best life.
Now if only I could get her to teach a how-to class for other doctors I have come across that don’t even seem to care about anything other than how well my insurance pays and how they can get me to come back even when it isn’t necessary.