A Doctor Burdened and Empathy Lost
I'm sitting in the waiting room for my quarterly doctor's appointment. I've arrived 15 minutes early to fill out the new year's insurance paperwork. I've given myself enough extra time to handle this and still go into my appointment as scheduled. Fifteen minutes go by and I'm still waiting.
I see patients shuffling in and out of the door; some more are waiting and trying to be understanding like I am. I expected there to be an interim, as there increasingly has been for the past few years, and idly watch the television hanging on the wall, fixed on a random network channel. Fifteen more minutes pass, and it's well past my scheduled appointment time slot. The medical assistant calls my name, then escorts me to the patient room.
She tells me to get onto the scale, then turns away. I miss the warm smiles I used to get on these visits. Now, it's strictly business. I take off my shoes and step onto the scale with my back to the number. With my history of eating disorders, I've learned that the number on the scale is a trigger for a relapse, so I choose not to know exactly how much I weigh and instead focus on how I feel and how my clothes fit. My doctor knows this, so it should be noted in my file. The MA looks at the number and says it out loud, totally defeating the purpose of my facing the opposite direction.
It's what I expected and I'm not really in shock, but it's still something I wish I hadn't heard. In my head, any number would never be perfect enough. But, it's still just a number, after all. I shake it off and sit on the table while she takes my glucose reading, then my A1c sample and blood pressure. Then, I'm told to wait for the doctor to arrive.
In the 10 minutes more it takes for him to come into the room, I filter through everything I've told him in the past year since having my second child. I remember telling him that I feel chaotic all the time, sometimes filled with anxiety. I'm overwhelmed and know that time will make things easier to manage as my children grow older. I feel guilty for not taking better care of my disease, but know that I've done the absolute best that I can do. At the same time, I'm struggling and feeling burned out. All of these things we've discussed on previous visits--and none of these things have gotten better. I'm hoping for some assistance.
The doctor walks into the room, reading my file as he shuts the door behind him. He glances up at me and says that I look good. I thank him for the compliment because I've earned it, diligently working out and eating healthfully for almost a year now. Exercise and diet are an area that I've been able to put myself first in, despite having two children aged two and under consistently asking for my energies and scattering my thoughts like a bag of marbles that's just been dropped.
I've prepared for this visit for weeks prior, listing off things I need to address in my mind. I have many questions--what I'm doing for my disease isn't working anymore. I'm ashamed that I haven't been able to keep my glucose in range as I've been able to do for several years before. I feel lost and worried that I may never get the control I used to work so vigorously toward, with success.
The doctor reads off my A1c with a bit of detachment and a touch of disdain. It's 8.6% today, the highest I've been in many years. I tell him exactly what my issue is: My mind is crowded with so many things that I neglect my diabetes. I test the same as always, 10 times per day, and keep my insulin tucked into the pockets of my meter for easy access. My dosages are right on and don't need to be adjusted because when I do take my injections the way that I'm supposed to (the way that I intend to), my glucose readings are stellar. I do a fasting basal rate test every few months and that doesn't need to be adjusted either. My issue is with the chaos in my mind.
There are many times where I will test my glucose, get distracted, and not read the measurement until several minutes later. I'm usually distracted again before I take my injection, so there's a lot of reaction dosages. I'm playing the chasing game with my glucose readings, always chasing the highs and lows instead of dosing on point. I'm aware of this issue, but everything I've tried to do to fix it isn't working. It hasn't been working for almost a year now, and I've been very vocal about it with my doctor. He's the best and I anxiously await his interaction.
He tells me that I need to do better, but offers no suggestions. I'm surprised that he offers no empathy at my situation, nor any input. I start to wonder why I'm even in his office if all he's going to do is chart everything I'm telling him about my treatment. I could have sent him a fax of the same information and saved us both the trouble and time of this appointment.
Trying to connect with him, I tell him that I'm considering going back to the CGM to use it as an alarm for when my glucose is climbing or dipping out of range. I need something to tell me "Hey, this needs to be addressed right now. Drop everything you're doing and fix this." I know CGMs aren't intended to act in this way, but are for learning trends in glucose reactions from things we do and eat. But, I'm hoping it might help me with my scatterbrain for a little while until I can feel like my controlled diabetic self again.
I'm so frustrated with diabetes at this point, that I'm nearly in tears sitting on the exam table. I need help and I'm doing everything short of begging the doctor for guidance. This is the third visit in the past year that has gone on in this manner. I've done extensive research on these repeated issues in the past nine months. But, as soon as I step outside the office doors, will I even cross his mind before my next appointment?
He suggests I start using a pump for my boluses, still using injected Levemir for a basal. I remind him of my allergy to pump catheters and the several ketoacidosis events due to failed pump signals for loss of insulin delivery. I remind him that I'm afraid of pumps because their errors have nearly cost me my life on many occasions--not to mention the fact that the convenience of having my insulin on hand isn't my issue. My issue is in my mind; the follow through, the taking care of myself before others, the anxiety build up, the unrelenting pressure to beperfect as a diabetic and as a mother, the trying to be a perfectly controlled person.
The appointment has lasted for about 20 minutes now, and it is clear that my doctor's mind is on the slew of patients in his waiting room. He tells me, "Good luck", shakes my hand and asks to see me again in another three months.
I leave his office feeling lost. Nothing was addressed, no solution was found, and I'm left still trying to figure things out and hoping that time will relieve some of the burdens in my mind. I'm considering anti-anxiety pills.
I wish that my doctor, who used to be very helpful prior to building up his clientele, would empathize with my situation. I'm struggling with my care and actively seeking resources to guide me. I wish that he would remember what it was like to raise his children as toddlers and how much energy this consumes as a parent. I want him to recognize that I'm not an uncontrolled diabetic by choice--at least to the best of my ability. I want him to say, "Let me think about this and I'll call you in a few days with some suggestions." I rarely ask for help, preferring to do things on my own terms, so for him to extend his hand would have meant so much to me.
For years, I touted him as the best doctor I'd ever received care from. He was personable, and would spend a few extra minutes just listening to me talk, and seemed to truly care. I guess even heroes can be set off course. I wait, in the trenches of my disease, still slinging mud and looking for answers.
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Categories: Doctor's Empathy