Advocating for Yourself Within the Healthcare System

Editor’s note: This post was written by Max Ivey, a new peer advisor for VisionAware. In honor of Healthy Aging Month, Max has written this post on his recent medical experiences.

Do You Really Communicate With Your Doctor?

Maxwell wearing a purple shirt and smiling at the camera

A recent experience with my doctors had me wondering how well people listen to their doctors. I also started wondering about how well our doctors talk to those of us who are blind or visually impaired. And finally, it made me think about what suggestions I could give people to make their experience more informative.

As a bit of background, I had gastric surgery in October of 2012. It was very successful. The medical group who did the surgery require courses in diet and nutrition as well as a psychological exam before someone is allowed to have one of their procedures.

The important part for this story is that they insist on continually monitoring their patients long after surgery. My doctor told me at our first meeting that once you are our patient you are part of our family for life.

During one of my check-ups, he noticed that my white blood cell count was elevated and explained what that meant. He checked it again in three months and said the numbers were increasing. He gave me a referral to a hematologist and helped find one on my insurance plan.

Thanks to my insurance provider, I had to also get a new primary care physician. At my first meeting with her I went over my medical history, mentioning pain and stiffness in my right shoulder and lower back. I showed her a rash I had on my waist and under my armpits. I also asked her about the potential significance of the elevated white blood count.

Tests and More Tests

She began to schedule me for tests and x-rays, counseled me on what remedies to take about my sore shoulder, and even took a photo of my rash and sent it to a dermatologist.

Not satisfied with the answer, she biopsied it and sent it off for testing. And when it came back as seborrheic keratosis she took the time to explain to me that this growth was not dangerous or cancerous but it could indicate an underlying condition.

She said that because of the location and the fact that I am almost 50 years old, a colonoscopy would be helpful in ruling out a lot of possibilities. She then walked me through that procedure before ordering another referral to a gastroenterologist who would eventually schedule and perform the colonoscopy, which turned out fine. Meanwhile, my white blood count was still going up.

Tests Are In

This week all of the tests were in and my doctor was ready to explain my diagnosis to me. It was a funny conversation. He said, “I am going to tell you what it is before I tell you what it is called.”

This turned out to be very smart of him. I have something called Cll, Chronic Lymphocytic Leukemia. He explained that there is a mutation in my white blood cells that causes them not to die off like they would normally. Since they aren’t dying off, the amount of them is slowly building up in my system. I am in the low risk group in stage 0.

There is nothing to be done, except to monitor my blood work to make sure the increase in white blood cells doesn’t speed up. My doctor told me that I could live a long time without any symptoms, and the information I have found online agrees with him.

I’ve also found that if it did ever start progressing more rapidly, there is a wide variety of treatment options. And many of the newer options have far fewer side effects.

The Point of the Story

The point is that my doctors took the time to explain my numbers. They told me what they meant and what other tests or procedures were indicated because of them and why. They told me what to expect during the procedures.

They gave me pain medicine or sedated me as necessary. They never talked to my family members instead of me. And because we had good conversations and I was fully informed, we were able to isolate this problem and diagnose it before it became a serious problem. Also, I know what to look for if anything changes.

As a result of my recent experiences, I would like to offer some advice to people with vision loss on interacting positively with doctors.

Communicating with Your Doctor

Do you actually talk to your doctors? Or do you go expecting a lecture and not really listen?
Do you ask them what your results are for blood pressure, pulse, temperature, weight, etc.? Often you can set the tone by quietly asking for and insisting that the nurse or physicians assistant tell you those numbers. It shows you are interested in your health and will often find its way to your doctor.
Do you show an interest in the findings? Here is where it helps to ask questions. The doctor has the report so I always ask what my cholesterol numbers are. I ask about my iron and potassium. I always ask them if there are any numbers that are out of line and then request an explanation as to what normal is and what my numbers could mean. Showing you are invested in your own health facilitates the communication and there may be things your doctor could do to help if he/she knows that you are invested in your health.
To improve communication, keep a health history on file with problems, surgeries, family history, and meds all printed out and keep it up to date.
Write or record questions for your doctor in advance of your appointment.
Take someone with you to be a second pair of ears in case you don’t understand something and also consider recording the conversation. Apple phones and many androids have a recording function.
When checking online, use reputable sites when researching your health issues like Web MD or Mayo Clinic.
Remember, it is up to you to understand your own insurance coverage and pharmacy benefits
Finally, remember that you are an ambassador for others with vision loss. So let your healthcare workers know and understand about your visual limitations, such as:

Not being able to read forms and consents in order to sign them with full understanding
How to use human guide when moving around the clinic
Giving clear instructions, such as where the restroom is located
Giving discharge instructions and other forms in accessible formats
Being aware not to interfere with dog guides

Consider Changing Doctors

Finally, I know it’s difficult in the current health care system to change doctors. Often just finding one who will take your medical coverage and who doesn’t live too far away from your home is a challenge.

I have been blessed to find several good doctors and specialists. But if you don’t feel your current physician is listening to you and communicating with you on a professional level, you owe it to yourself to find another doctor.

Make a Commmitment to Take Care of Your Health

When you are in poor physical health, every other aspect of your life will suffer. It becomes your focus. It becomes your only subject of conversation. It will affect you in your profession or business, and it will keep you from living a happy fulfilled life.

I hope you will talk to your doctor next time. Tell him or her everything. And if you don’t have a regular physician, then by all means take whatever steps possible to get one.

Building a relationship with this person is essential to your proper care. I hope you will take steps towards getting in better physical health.

What Are Your Experiences?

Take a moment to tell us your experiences with the medical profession.