/ Ulcerative Colitis

Steps to take when your doctor doesn’t listen to you

As an patient with a chronic illness, I know first-hand what it feels like when a doctor’s office isn’t listening to you.

Let’s be honest, a day in the life of a doctor is not easy. They are flooded with paperwork and insurance company demands. Not only do they have to balance an extremely packed schedule, they must also keep up with the most recent research and meet the unique needs of the individual in front of them at any given point of time.

In an effort to be efficient, many run through questions that require yes or no answers and check off boxes according to protocol. I’ve found that many doctors have the desire to connect with their patients, but due to these other restraints and responsibilities, the opportunity to connect may be missed.

Here are steps you can take if your doctor isn't listening to you

Using my experiences as a IBD patient, I’ve come up with a step-by-step guide on actions you can take to advocate for yourself when you feel your doctor isn’t hearing you.

1. Be honest about how you are really feeling

communicating health goals

When the doctor says “How are you?” how do you respond? Are you being completely honest and upfront with what has been going on? Maybe you say you’re “fine,” because that is how you respond to your friends and family when they ask this question in passing. But are you really? Answer this question as honestly as possible when you speak with your doctor. Some people find it hard to verbally express how they really are doing. In this case, It might help to try one of the following:

  • Bring a journal or list with you that goes over what you’ve been experiencing day to day.
  • Download an app that helps track your symptoms such as Flaredown or My Pain Diary.

Perhaps you are feeling fairly stable the day you are in the office, but the day before, you could barely get out of bed. It can be hard to remember the bad moments when you feel good, but to make the most of your appointment, always discuss the worst days with your doctor. The doctor cannot help you if you don’t provide a full picture of what’s happening with your health.

2. Set clear goals and communicate them

communicating health goals

Take some time to consider what you want to get out of this appointment. Why are you going into the office? A good greeting statement might include how you’re feeling now, how you’ve been feeling in recent weeks, and what you want to feel like in the future.

“I feel __________ today. There have been days recently where I feel__________-. I’d like to discuss with you how I can feel ___________ in the future.”

For example:
“I’m feeling pretty good today, but there have been days recently where I’ve missed work due to overwhelming fatigue. I can barely get out of bed some days. I’d like discuss with you how to find a way to feel better and have more energy.”

If the doctor is listening and being respectful of your time, they should be responsive to this conversation and open a line of communication. If they disregard this statement and you feel your concerns are being dismissed, try again. Answer the questions they have of you, and at the end of the appointment, let them know you still don’t feel like you have clear instruction how to (feel better and have more energy) or whatever your concern is.

This is your appointment, your care, and your money. Don’t let it go to waste because you are afraid of being too pushy or taking up too much time. Your treatment and health goals are priority number one, and if they are not being reported or recognized, how will they be obtained? You must advocate for yourself.

3. Ask the Right Questions

being honest with your doctor

Perhaps the communication barrier lies in the times between appointments when you cannot speak with the doctor. When I was labeled noncompliant by the previous GI, I discovered that the messages I was leaving with the receptionist and the nurses were not making their way to my chart where the doctor would see them. I was active in my care, but because the office staff was not communicating my concerns with the doctor, the doctor did not know. When I brought this up, I was told that “I should have asked to speak with the doctor directly,” and “We have so many patients, sometimes the squeaky wheel gets the oil.”

At the first appointment with my new GI, I told her everything that had happened and that I was hoping to prevent this from ever taking place in the future. I asked how I could best communicate with her office between appointments, and she provided multiple resources. She admitted they hadn’t found the perfect system yet, but gave be a binder of numbers to call and message centers where I could reach her and her team. She set up the expectation and response time, and assured me that any questions I had between appointments would be acknowledged, and to be persistent if I felt I wasn’t being heard when I called. I felt confident that I knew how to communicate with the office because I had asked.

Some other questions that may be helpful to bring to your next appointment:

  • If I’m having the onset of a flare, should I use the patient portal to contact you first, or call?
  • If I need an urgent need for an appointment how long should I expect to wait for an opening in the calendar?
  • If I have a question on a medication, who should I call?
  • If I am thinking of going to the ER, who should I notify?
  • If I leave a voice message, how long should I wait to expect a return call?
  • Who should I talk to if something urgent happens on the weekend?
  • If I need a refill of a medication, how far in advance do I need to notify you?

4. Find a new doctor

searching for a new doctor

You have options, even if it doesn’t feel like it. You have the right to choose your care providers. If you do not feel a member of your care team is hearing you and you have exhausted all attempts to communicate, it may be time seek alternative care.

If this a route you decide to take, don’t just up and leave. Make your concerns known to the people in charge. Find out who the person in charge is and give them examples of when you didn’t feel heard in writing. When I did this, I received a call from the Supervisor who apologized profusely for the actions of his staff and let me know that should I ever want to return he would make sure I received better care. The call came four months too late, but I appreciate the fact that someone finally listened.

When finding a doctor that you connect with, make sure to thank them for taking the time to listen to you. Feedback is crucial for improving patient care, and the more we can recognize when it is being done effectively, the better. When you find a doctor that listens to you and acknowledges your goals, together you can create a treatment plan that works. When you’re a part of the process, you may be more likely to adhere to the plan and get back to the ultimate goal: living the life you dream of.

Jacklyn Green

Jacklyn Green

My name is Jacklyn. I’m learning to live with ulcerative colitis. I was diagnosed on April 17th, 2013 with UC. Aside from having UC, I practice yoga, and love my corgi-mix dogchild and my boyfriend.

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