So, youāve found the right doctor. Hereās the first question you need to be asking.
When youāre living with a chronic illness, your most valuable asset is a strong relationship with your doctors.
The rest of your support team, especially those whoāve walked in your shoes, is also extremely importantābut in its own, different way. My IBD family is there for me day in and day out. When Iām struggling, theyāre the ones I turn to. Theyāre my source of information, they help me make important decisions, and theyāreĀ the reason I can make it through the hard days and the flare ups.
But the fact is, though my friends with IBD help keep me sane, theyāre not the ones writing my scripts, ordering blood work, scheduling tests and procedures. My doctors are the only ones who can do those things for me.
No, theyāre not always right. They donāt always have the answers, or make the best judgment calls. And they donāt know your body as well as you do. But, like it or not, theyāre part of your teamāassessing your health, calling the shots, prescribing medicationsāso you want them working with you, not against you.
Sometimes itās easy to get lost in our own research, public forums and private group chats. But while itās absolutely important to be our own advocates, itās just as important to remember that most of us donāt have medical degrees (and that those of us who do canāt view our own cases objectively). The fact is, we need our doctors, and they need our input. We can walk into an appointment armed with suggestions from fellow patients, but itās our doctors who ultimately decide what we should or shouldnāt try.
However, this doesnāt mean you should have zero input. This isĀ your health and your body, and you have a right to be involved in the decision-making process.Ā There are specialists out there who roll their eyes when you pull out your list of questions or bring up a study you read about. If you happen to meet with one, I suggest you make it your first and last session together; they wonāt do you any favors in the long run.
Itās hard to find a doctor you trustāsomeone youāre comfortable with, someone who takes the time to hear you out and include you in the decision-making process. Someone who treats you like a person instead of a patient. When you are lucky enough to find someone like that, you feel at ease. You start to form an attachment and build a relationship. Thatās really what it is: a relationship. And if that relationship becomes uncomfortable, itās time to end it. But thereās a chance you might find yourself at the end of a great relationship without even knowing it.
A few weeks ago, I emailed one of my doctors for a prescription renewal. Weād been working together for two years (I say āworking togetherā because thatās how I view my doctor-patient relationshipsāas two-way, rather than one), and she was comfortable providing me with her professional email address and personal phone number for emergencies. But when I emailed her, I had a weird feeling. I thought to myself, āWhat if sheās not working there anymore?ā I donāt know why I questioned it, as I really had no reason to. But I decided to follow up on my email with a call to the office. And, sure enough, I was met with a voice on the other end of the phone telling me, āJust so you know,ā Dr. X is no longer with the practice.
I was given the name of another doctor, who I was told would be taking on all of Dr. Xās patients. And then I was informed that the medication I was looking to renew was nowhere on my chart. (Iām still waiting to get said medication in the mail, and I run out in a few days.)
My doctor was gone, with no warning. No phone call, no letter from the medical group, no outreach from the new doctor assuming her role. And a medication I take on a daily basis was somehow now missing from my record. I immediately felt upset, overwhelmed, anxious and a little angry. That might sound ridiculous, but let me explain.
For years Iāve been dealing with bad headaches. I finally had a neurologist not only diagnose me with chronic migraines, but also pinpoint what triggers them. She helped me experiment with medications until we found a treatment thatās been somewhat effective. She took into account my Crohnās disease and all of my medical issues, consulted with other specialists of mine, most importantly my gastroenterologist, and took the time to consider why methods that have worked for others might not be best for me. We worked together on an individualized approach. She told me to reach out right away when I was dealing with pain, and assured me weād address it right away. She was able to read my face and tell when I was doing well and when I wasnāt. And she went to bat for me when my insurance company tried refusing to cover my medication, pushing generics that Iād already failed on. She even prescribed a low-does anxiety med to help with the tension the migraines were causing.
So, hereās where my mind went. I went from having this person in my corner who knew my situation and truly seemed to care, to having nothing but the name of another doctor, whom I have yet to meet, and the hope that heād renew an important prescription about to run out. I pictured my parents picking me up from work in the city last year during one of the worst migraines Iāve ever had, when I threw up four times on the drive home, and spent the rest of the day with my eyes closed. I pictured being unable to eat or stay in a room with the lights on. I pictured the times it got so bad I had to resort to Prednisone, which my doctor had ready as rescue option. And I pictured having to explain all of this to someone new, from square one, working off nothing but notes left behind, which clearly werenāt even enough to validate the medication Iām currently onā¦
I wondered if it was weird that this bothered me so much. But, after thinking about it, I realized a few things. First, most of us who have chronic health issues see our doctors more than we see some friends or extended family members. These are people we trust to take care of usāwe put our health in their hands, we reveal personal and private information. We count on them to keep us functioning at our best. And when theyāre great about it, it eases our minds and makes us feel like we have a safety net when something goes wrong. It means we can fight less and trust more, because we already have someone on our sideāsomeone who the pharmacists, hospitals and insurance companies will listen to.
So to have one of those relationships ended without notice, one of those safety nets pulled out from under me when I wasnāt looking, it felt personal. How could someone who seemed to genuinely care about my health just walk away without even giving me a heads-up, time to plan, potential to consult, a smooth transition?
I guess it just makes me wonder, what if my gastroenterolgoist decided to walk away tomorrow, without warning his patients? What if I go for my colonoscopy next month and find someone new at the other end of the scope? No matter howĀ āused toā these procedures I get, Iāll never want a stranger putting a tube up my rear end. Maybe it sounds silly, but to me itās about the bit of dignity Iāve maintained. Iāve been poked and prodded everywhere you can imagine,Ā relinquishing control to medical professionals. I mean, if youāve ever had a rectal exam, you know what Iām talking about. Some doctors make you feel as comfortable as possible in these extremely personal situations, and some donāt. Ā At least one has left me humiliated and in tears. Bedside manner counts.
Iāve left a doctor by choiceāand even then I gave notice, rather than just walking away and never showing up again. It was bad enough having to start over when it was my choice: going through my entire medical history with someone new, having no idea how heād react. But Iāve never had a doctor leave me, and certainly not without warning. This is a first.
Awhile back, I wrote about how itās about doing whatās right for you, not whatās right for your doctor, and I think raising this issue is an extension of that. From now on, Iāll be making a point before my next followup visits, as well as any first-timers, to add one more question to my list: If there comes a day when you choose to leave this practice or profession, will you help your patients transition?
Because if the answer is anything but yes, I have some serious reassessing to do.
I donāt think any of us expects to stay with the same doctors for the rest of our lives, but we do expect and deserve consistency. Notes left behind can only go so far, as we know a patientās story goes far beyond a few symptoms, test results and counts. Itās always about the bigger picture, and the doctors who see it versus the doctors who donāt.
But finding the ones who see it 20/20 is not enough. There was a time before them, and there will be a time after them. And preparing for the after is just as important as the now.
Exam rooms feel cold and empty enough as it is; the least we can do is assure a warm welcome and presence for the amount of time we spend in them.
