After years of working in the health care field, two philanthropists had had enough of hearing patients ask for doctor referrals because their current physicians didn’t know what to make of their symptoms.
Alex Klurfeld, a physical therapist, entrepreneur and philanthropist who is devoting time with his wife, Diana to sourcing articles and information about rare disease research and advice in order to fill a void that currently exists in the medical community.
A lack of funding for research is another problem, but we’re just looking to address the lack of sharing of information which is inexcusable. Today the couple is looking to increase awareness about issues that have been hidden from view.
Receiving a rare disease diagnosis shifts your world on its axis. It is a stressful and challenging time for anyone. Many patients have questions and concerns but find it difficult or intimidating to talk to their doctors about these things.
It is essential that you feel comfortable enough to ask your doctor about your concerns and feelings openly. Your doctor can only treat you effectively if they know what is happening. Below are some tips to make it easier to communicate with your doctor about your rare disease.
“Patients with rare diseases value honest and open communication with their doctors.” DianaKlurfeld organizer for Klurfeld Cares
“Judge a man by his questions rather than his answers.” Voltaire
The day before your appointment, take a moment to prepare a written list of questions and concerns. If you have a list of questions and concerns written to bring with you, you are less likely to forget what you want to talk about when you are in your doctor’s exam room.
If you feel too nervous to start a conversation, you can hand your nurse your written questions before the doctor comes into the room. “Your nurse will give your questions to the doctor, and then they will be able to answer the questions and address your concerns during your appointment” says Alex.
Some patients struggle with what questions to ask their doctor. Here is a list of common questions that patients with rare diseases have.
There is no question too silly or embarrassing to ask your doctor. You will not shock them. Your doctor wants to answer your questions and values open communication with you.
It is helpful to bring a trusted friend or family member with you to your doctor’s appointments. According to Alex Klurfeld, “patients have told me that sitting in your doctor’s office, you can feel like you are experiencing information overload.
It is easy to miss or forget something that is said. Bringing someone with you will help carry the information load.” There is someone else there listening to the same information. It also gives you someone to discuss the appointment with. They can listen to your questions or concerns and give your feedback.
“Patients that have a strong support system of friends and family tend to have a better quality of life and better adhere to their drug protocols. They also have better mental health.” DianaKlurfeld, Klurfeld Cares
Wear clothes that give you confidence. This may seem like an odd suggestion, but it truly can help you feel more comfortable speaking with your doctor. We all have clothes in our wardrobes that we only wear around the house.
These clothes are comfortable to wear, may even be nostalgic (like that worn-out college sweatshirt you wear on Saturday mornings). As comfortable as they are, those clothes don’t make you stand up straighter, give your step extra purpose, or inspire you to feel confident.
Diana Klurfeld suggests wearing clothes that make you feel like you can take on the world. If you find makeup to be empowering, wear it. Do your hair if that is your thing. You are dressing to impress yourself. Clothes have been proven to affect our mood and how we see ourselves. Sodress for confidence.
Doctors run a tight schedule. Because of that, you are given a lot of information in a short amount of time. Bring a notebook and take notes of what your doctor says. You can also ask your doctor to write down the crucial things if that works better for you. Having a written record will help you recall what was said at the appointment and allow you to go over it later.
Writing down what is discussed also makes it easier to discuss the appointment with the rest of your care team.
“That is the essence of science: ask an impertinent question, and you are on the way to a pertinent answer.” Jacob Bronowski
Do not be afraid to raise any questions or concerns that you may have about your doctor’s treatment plan. Your doctor wants what is best for your health, but they do not live in your body. If you have concerns about any medications or treatments that your doctor has suggested, talk about them.
You are the one that lives your life and experiences the treatments. Don’t be afraid to speak your mind. You are your own best advocate.
Referrals and References
Ask your doctor for suggestions for reference materials, brochures, and websites that would be helpful for you to learn about your disease or treatment protocols. If you child is suffering from a rare condition, set an example and show them how to cope.
You can also ask that they suggest support or advocacy groups for people diagnosed with the same rare disease that you are. Support groups are an invaluable resource. Having a rare disease can be very isolating. Support groups can alleviate some of the loneliness and isolation.
You and your doctor may disagree on your course of treatment. If that happens, it is customary to ask for a second opinion. It is crucial that you feel comfortable with the treatment protocol that you are prescribed. If you are leary of it or uncomfortable with it, you are more likely to skip doses or stop taking it altogether.
Your doctor is a professional and will not be angry or disappointed if you ask to get a second opinion. Your health is more important than any awkwardness you may feel by asking for another opinion.
“When someone has a rare disease, getting a second opinion is like brushing your teeth. It is just a normal part of your day. Thirty-five percent of people who have a rare disease have been misdiagnosed before they received the correct diagnosis. So they trust but always verify their doctors.” Diana Klurfeld
While at the office, make your next appointment and put it on your phone calendar. This will ease the anxiety of having to call back and make another appointment. It will also allow the person you bring to your appointments to arrange their schedule to be there again. If possible, it is helpful to have the same person attend your appointments with you. This allows you to have the consistency of someone who knows what is happening with your healthcare. It also saves you time and energy having to bring a new person up to speed at every appointment.
“The more you praise and celebrate your life, the more there is in life to celebrate.” Oprah Winfrey
Schedule a reward for after your appointment. You made it through! You asked the hard questions. Now it’s time to reward yourself. Go to lunch with a friend when you get done, get your nails done, read a book, or go to a movie. Do something to reward yourself for accomplishing something challenging. You’ve earned a celebration.
When you have a rare illness, there are plenty of hard things, plenty of painful things, and lots of work. So make room in our life to celebrate even the small wins. It is these times that make life fun to live. Let yourself have fun. Be proud of your accomplishments. You deserve to celebrate yourself!
“The relationship between doctors and their patients is a sacred thing. That a person would trust another to keep their body healthy and their mind sound is a gift never to be taken for granted.” Diana Klurfeld
Communicating with your doctor about your rare disease can be intimidating. But using these tips can make it seem less challenging. Your doctor wants to provide the best healthcare for you that they can. They like it when patients are open and honest about their questions and concerns. Open communication makes it easier for them to do their job.
“Your worries, concerns, and questions are valuable. You don’t have to feel embarrassed by them. You have only one life and one body. You need all the information you can get to make the best decisions available to you about your care. Share your concerns with your appointment support person before talking to your doctor if that will allow you to feel more comfortable.” – Alex Klurfeld
The information in this article is not meant to diagnose or treat anyone. It is intended to be used for information purposes only. We are not doctors. Please talk to your doctor before making any decisions regarding your healthcare.
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