I spent the good part of today with a group of doctors who donated their time to work with young adults who have Cornelia deLange Syndrome. I mention the name of my daughter's condition because it is not well-known and like fibro, there needs to be much more research so the symptoms can be treated and managed more effectively than they are today. When my daughter was born thirty-two years ago, there was almost nothing known about her diagnosed syndrome because it was so rare. Even though I had very nice doctors, they really couldn't help me to manage the multiple challenges we faced. We learned together. I had genetic specialists in Philadelphia that I consulted over the years and through their effort and dedication, they have identified the cause of CdLS. They never stopped for a moment working and researching to find out as much as possible about all aspects of this disorder. I also had the benefit of a newly formed parent support group that I am still active with today and I relied on that support they way I rely on my fibro community.
There are doctors out there who are incredibly amazing and not at all ego-driven. When I am in their presence I can feel their compassion, curiosity and expertise as they ask probing questions and give their well-considered responses. Today my daughter met with eleven doctors and ten of them were fabulous. Number eleven was a bit of a disappointment and what's interesting to me is that my hubby had the exact same take on him - and that was before he, as an internist, declared to me that there was no such thing as fibromyalgia and it was the same thing as chronic fatigue and who wouldn't be tired if they were in pain. I was there for my daughter, this was not about me. We were exploring reasons why she fatigues so easily, why she is stiff in the mornings and why she has so much pain. I just briefly mentioned my diagnosis and that man just cut me off at the knees. He wasn't even nice about it - he was snippy and curt. I was there to find out as much as I could learn about how best to manage my daughter's symptoms. Other doctors asked multiple questions about family medical history. That's what great doctor's do.
So what makes the difference between a good doctor and a great one in my mind? What I noticed today is every great doctor was a good listener. They each made eye contact as they spoke and they didn't talk down to us. They had a wide range of knowledge and expertise in their field and they were at ease when asked a question. They didn't appear to be defensive or all-knowing. They talked in terms of what might be happening and suggested strategies for testing and figuring it out. They looked to be clear and concise as they discussed symptoms and what they could mean. These great doctors recognized that they have more to learn and are very willing to confer with other doctors before drawing conclusions. A great doctor continues to learn, continues to dedicate him/herself to their profession and keeps the patient utmost in their mind. I was happy to be in the presence of great doctors today and I am enormously grateful that they were there to take care of my daughter.
There are doctors out there who are incredibly amazing and not at all ego-driven. When I am in their presence I can feel their compassion, curiosity and expertise as they ask probing questions and give their well-considered responses. Today my daughter met with eleven doctors and ten of them were fabulous. Number eleven was a bit of a disappointment and what's interesting to me is that my hubby had the exact same take on him - and that was before he, as an internist, declared to me that there was no such thing as fibromyalgia and it was the same thing as chronic fatigue and who wouldn't be tired if they were in pain. I was there for my daughter, this was not about me. We were exploring reasons why she fatigues so easily, why she is stiff in the mornings and why she has so much pain. I just briefly mentioned my diagnosis and that man just cut me off at the knees. He wasn't even nice about it - he was snippy and curt. I was there to find out as much as I could learn about how best to manage my daughter's symptoms. Other doctors asked multiple questions about family medical history. That's what great doctor's do.
So what makes the difference between a good doctor and a great one in my mind? What I noticed today is every great doctor was a good listener. They each made eye contact as they spoke and they didn't talk down to us. They had a wide range of knowledge and expertise in their field and they were at ease when asked a question. They didn't appear to be defensive or all-knowing. They talked in terms of what might be happening and suggested strategies for testing and figuring it out. They looked to be clear and concise as they discussed symptoms and what they could mean. These great doctors recognized that they have more to learn and are very willing to confer with other doctors before drawing conclusions. A great doctor continues to learn, continues to dedicate him/herself to their profession and keeps the patient utmost in their mind. I was happy to be in the presence of great doctors today and I am enormously grateful that they were there to take care of my daughter.
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