Health problems are a great equalizer. No matter how confident or smart or health-conscious a person is, just about all of us will one day enter a doctor’s office feeling vulnerable and worried about a symptom or test result.
What happens next depends a lot on the doctor. In honor of Doctors’ Day on March 30, we asked CSL Behring’s patient advocates to share the best advice they have received from a doctor. All have many doctor appointments under their belts as they are either caregivers or patients living with conditions like immune deficiencies, bleeding disorders, hereditary angioedema (HAE) and chronic inflammatory demyelinating polyneuropathy (CIDP). CSL Behring, driven by its promise to patients, is a global biotech leader that develops and manufactures medicines for people with rare and serious diseases.
The patients and caregivers responded quickly and we received more responses than expected. Several even added an additional note of gratitude for the doctors who helped them unravel medical mysteries and set them on the road to better quality of life. We also asked our on-staff M.D.s about memorable advice they have received from doctors, which included physicians who have mentored them along the way.
Best advice from a doctor: What patients said
Machelle P., patient
My doctor wanted me to understand that what we “know” today is sometimes very different than what we “knew” 50 years ago and will very likely be very different from what we “know” in the future. My doctor also told me never give up hope.
For every “bad” experience you have with a series of doctors, all it takes is one really good experience, with a doctor who listens to you and makes you feel validated, to make those bad memories fade away.
Lisa C., caregiver
The best thing a doctor has done for me is acknowledge that I may be more knowledgeable about my son's HAE than he was, and offer to learn what he could to help. It had to be a very humbling experience on his part, and it meant the world to me especially after so much defeat along the path of a diagnosis.
Angela K., patient
It wasn’t exactly advice, but there have been three doctors (all still involved in my care) who slowed down, really asked a lot of questions, and ran some additional tests to dig deeper into my symptoms. Each of them discovered something they didn’t expect that led to true solutions for me. I’m so grateful they took their time and went the extra mile for me!
The gratitude I feel for my doctors is impossible to convey in words. They have no idea how much I count on them as a lifeline to help me sustain quality of life. I wish I could do more to show my appreciation for all that they do!
Annette G., caregiver
My daughter’s doctor said, “don’t look up this disease on the Internet until you start treatment and understand it.”
Our doctor not only gave our daughter the freedom to live, it put our family back together again … priceless gift.
Rick S., patient
My doctor always says, "you know your body better than I, what do you think?"
Cheryl F., patient
You know your body best, trust what it is telling you.
Michael S., patient
Be honest about your health care, medications, how you’re feeling, what you are – and are not – willing to do treatment-wise. Don’t be afraid to give “wrong answers.” Trust your health care professionals!
Thank you so much for all your hard work and dedication during this pandemic. I appreciate y’all so very much!
Danielle D., patient
You are in the driver seat of your health and wellness. We can go as fast or as slow as you want to take things.
We are all very thankful for your dedication and passion for health!
Appolos L., patient
Take care of yourself, take your medications and follow up with your appointments.
Doctors are your best friends, trust your doctors.
Evelyn P., patient
My doctor advised me to see another doctor with more experience with my disease.
My doctors aren't giving up on me. So, I can't possibly give up on myself. They inspire me with their determination. I wish they knew how much I appreciate them.
Estelle H., PhD, and a patient
Don't give up trying to find a diagnosis and explanation for your symptoms.
I'm so grateful for the kind neurologist who finally diagnosed my rare disease. After more than two years of searching, I was relieved to finally make sense of my symptoms.
Dani W., patient
Healthier you, little by little.
Eric N., caregiver
Self-care for caregivers is essential. You can’t help your child if your internal battery is running low. We wouldn’t think of letting our smart phone constantly run down to 10%, but that’s what we do as caregivers
Jodi E., patient
Don’t give up - we will keep working together!
Thank you so much for taking the time to listen to me. My neurologist is kind, compassionate, and easy to talk to. When I see him , I feel like I am the most important person on his schedule. Thank you for giving me my quality of life back!
Best advice from a doctor: What the doctors said
Toby L. Simon, M.D., Senior Medical Director, CSL Plasma
I starting losing my hair in my high school years; my alarmed parents took me to several doctors. Finally, a very senior physician told my parents and me that I just had to accept my baldness as a male characteristic and stop looking for treatments to reverse it.
Andrew Koenig, D.O., F.A.C.R., CSL Behring Global Therapy Area Lead, Global Medical Affairs, Immunology
My mentor told me to be quiet and listen to the patient. If you are careful, the patients generally can tell you what is wrong, but you must be open to hearing it. As physicians, we are privileged to care for those who seek our help and must never take for granted the trust put in us by those in their time of need.
Kathleen Madden, M.D., Area Center Medical Director, CSL Plasma
The best advice I received came from the chief of Transplant Surgery in Chicago. The first and only requirements for his medical students are to either answer his questions correctly and confidently, or answer “I don’t know.”
His rationale is that medicine requires teamwork; everyone on the team has the same goal of providing the best possible care for patients. The most important thing is recognizing when you don’t know all the answers or how to solve a problem and that you are willing to ask your team to help you care for the patients. It provides the best outcomes for patients and everyone on the team learns something new with that attitude. I’ve tried to pass this on to all the other medical students and residents that I’ve taught in surgery and pathology over the years.
