by: Robin Bennett
For those of you who haven't met me at the other convention, I am a genetic counselor at the University of Washington and I work with Dr. who is a geneticist and a specialist in all collagen disorders including Ehlers-Danlos syndrome and he'll be here tomorrow. In the last couple years I have given a talk on basic genetics, but we always have lots of genetic experts here and I thought that would be redundant to hear again, so I thought about what I may contribute on a different line and I thought maybe I could talk about how to get along with the medical professionals. In my job I sort of act as a patient advocate for the families that we see, and sort of a go-between between the physicians who come and say well you have things that are with names this long, and my job is to help people interpret what they've been told and help them get plugged into support systems. I feel I have sort of a unique perspective in that I can see both sides; I can see the patient's side and I can see the physicians side. So, I thought I would give you some ideas of my perspective on things that maybe might help you and then at the end maybe you can give me some perspectives on what would help you and give some of your friends here some ideas on what has worked for you.
I gave the name of my talk as "Getting Along With Medical Professionals" but that is not really what I meant when I thought about it. I mean more how can you communicate with health professionals and by communicate I mean communicate as a two way street. So how can you talk to the professionals and they can talk back to you. Actually, communication is a two-way street. I thought I would begin by asking how many of you see a doctor on a regular basis. Probably everyone. How many of you see more than two doctors on a regular basis? How many of you more than five doctors on a regular basis? Yes, so basically, when you live with something like Ehlers-Danlos syndrome, you really see lots of doctors and other health professionals, and I say doctors but I really mean all health professionals. So what are some of the kinds of doctors that we see? Orthopedics, Rheumatologists, Cardiologists, Ophthalmologists, Psychiatrists, Interns. Basically, that boils down to you seeing lots of different doctors and what that means is you really need to find someone who can coordinate your care. You really want this whole group of doctors to work as a team instead of looking at little pieces of your body; looking at your feet, looking at your joints, looking at your heart, looking at your eyes. You know, you really need someone to look at you as a whole person and not as all these little tiny pieces. Sometimes the person that you might choose to be that support person, and this is important, may not necessarily be your regular physician. It may be someone like a genetic counselor, because genetic counselors are a unique aspect in that if you come and see a geneticist, they are used to looking at your whole body not at little pieces of your body, other than your little pieces of genes. Genetic counselors can be a good resource for you in terms of finding someone who can help coordinate all of your care. It depends on what access you have near your home. A nurse might be a good person that can help coordinate your care; a social worker. There are many people and there is no right person to coordinate your care. It is who works for you. Nevertheless, it is so important to try to identify someone that you can really work with.
So how do you choose your doctor? Well the first thing you need to do is do some homework and find out about your doctor and the other professionals that you will be working with. You can ask about their credentials; you could maybe ask their secretary if you could see their resumes; see what kind of papers they have ever published. Credentials do not necessarily make a good doctor. One thing I think of is if...I work with lots of physicians you are very well known in their field and very famous, but that doesn't necessarily make them good people, good doctors to work with people. I think of it as if the doctor has a zillion credentials after their name maybe they've spent more time in their lab than with people, and maybe they're not the best doctor to work with. But then again, if they don't have any credentials after their name, you have to wonder about their quality too. All the things I'll talk about this morning, it's sort of 50--50, one or the other. You have to weigh what you want from your doctor. If you want to go see the experts, probably lots of people what to go see that expert and that person might not have the time to talk to you every day on the phone. If you want your doctor to be your friend, then maybe you shouldn't pick someone whose the world's expert at the university. You go and see your local doctor and those are real important things to weigh. You need to think and sit down and write on a piece of paper what do you want to get out of this relationship with your health care provider, whatever type of specialty they are. A very important thing about finding a physician again is their bedside manners. How do you get along with that person; are you able to feel comfortable asking them any questions that you want to ask. This is sometimes more important than all the credentials in the world. It is really having a doctor who has good beside manners.
Another important thing is, is your physician willing to learn? You don't really have to go to the world's expert if it is someone who is willing to learn. Maybe when you meet your physician they say I really have never heard of Ehlers-Danlos syndrome, but I am willing to learn about it. That might be the best kind of doctor to see, because you can tell them things that are important to you and sort of steer them in the direction that you want instead of someone who thinks they know everything, and isn't going to be as open to new ideas or new therapies that might be available.
Another really important thing to find in a physician is one who is willing to say I don't know. If your doctor knows everything, he is probably not a very good doctor. So make sure they are willing to say I don't know.
If your physician is willing to learn and willing to say I don't know, you might ask; are you willing to join the Ehlers-Danlos National Foundation; are you aware of them? You need to educate your physician so that they know what resources are available to them also.
Another important thing is know about the availability of your physician; can you reach this person when you need him? Some of the head honchos may not be available; they're touring the country, they're in their labs, they're hard to find. Again, you really want to find someone who is available and that might be the support person you find to coordinate the care between all these physicians. That's who you really need to be able to get in touch with because that person can help decide what doctor you need to see or who to get in touch with in an emergency, if the doctor you regularly see is not available. So, again, availability. Maybe the best way to choose your doctor is ask your friends. Call the Ehlers-Danlos Foundation and say who is a good person to see in Seattle, who is a good person to see in Tennessee? That really the best recommendation you can have because if it works for someone else, it may work for you, also.
I want to go on and talk a little bit about a syndrome called The Doctor is God. There was a man driving along who was hit by a car. He died and went to heaven where he found himself in this long, huge line of people waiting to get in. He's waiting and waiting and waiting to get checked in when this guy with a white gown, a medical bag and stethoscope comes running along and pushes himself in front of everybody saying, â€śget out of my way, get out of my wayâ€ť, and going right to the front of the line. One man says to the person next to him, â€śwho does that guy think he is, God or something?â€ť The other person says, â€śno that is God, he just thinks he is a doctorâ€ť. This is the Doctor is God syndrome.
Here are some traps to avoid. People say the doctor knows my body better than I do. This is an easy trap to get into. A person will think, I shouldn't ask questions, my doctor knows best because didn't my doctor go to school for what is it 16, 20 years to be a doctor. They have all this training. My doctor knows best. I shouldn't seek other opinions, my doctor might feel that I don't trust, so I shouldn't go after other opinions. My doctor knows my prognosis. My doctor knows what will happen to me. My doctor can cure me, my doctor has the power to cure me and I have no control over my body. Whatever happens to me, happens to my body because of my Ehlers-Danlos syndrome or whatever. I am afraid of my body; I don't want to know too much because knowing too much would be very scary. These thoughts build the Doctor is God syndrome. Let's talk about each one of these things and how to get out of the Doctor is God syndrome.
The first thing you have to do is change your mindset. Set your mindset to use I statements instead of my doctor statements. Really separate your disease from your body image, your self from your body image. You have Ehlers-Danlos syndrome and there is nothing you can do to change that. That is the reality. There are things you can do to help with Ehlers-Danlos syndrome, but it is a fact that you have Ehlers-Danlos syndrome. Now if you can have things happen to your body and have Ehlers-Danlos syndrome yet not necessarily have it mean that you're not good enough, you are building your self. Ehlers-Danlos syndrome does not have to be part of your definition of who you are. You can say I am, â€śRobin Bennett and I have Ehlers -Danlos syndrome,â€ť but you are not Ehlers -Danlos syndrome. â€śHi, I am Robin Bennett. I am person from Ehlers -Danlos syndromeâ€ť. A way to think of it is that your body is sort of the vessel that your being is in. If you can separate your self out from this vessel of your body, you can allow yourself to grow regardless of what happens to your body.
Another thing you can say is you have a responsibility or I have a responsibility to know this vessel that is my body and to take care of it properly so that I can get the most out of me, allow the me that's inside of this body to get the most out of life possible.
Keeping that in mind, lets talk about the Doctor is God myths.
1. The doctor knows my body better than I do.
Even when you go and see an expert, you know more about your body than the doctor that you are seeing because everybody is different. Everybody with Ehlers-Danlos syndrome type IV is different. Even though they all have the same genetic things, we can just look around the room and see you all look different, you have different medical problems, everybody is different. Even something like Downs Syndrome, if you have ever met a child with Downs Syndrome, they grow up different. Some of them can go to regular schools; some of them don't do as well. You are given sort of this card with Ehlers-Danlos Syndrome, but there are ways to get around it. Again, you are the expert on your body and you need to educate the physicians you work with.
2. I shouldn't ask questions.
You should ask questions. You have a right to know everything there is to know about your condition and you should ask all the questions you can and there again you need to educate your professional answer your questions. One way you can educate your professional is to wear a medical alert bracelet so that if something happens to you that you are unable to talk, that they will know how to take care of you. So if you are thinking about asking questions, you say your body is your primary responsibility and you need to ask as many questions as you can to take care of your body. People say there is no question that is dumb, and it is so true. Any question is a good question and make sure you ask anything on your mind. When you ask a question, if your doctor seems put aback or threatened by being asked the question, maybe your physician has self doubts about his own knowledge and may be ignorant of the answer. Sometimes when you ask your physician a question and he seems put off by it, and doesn't have the answer, he may become aggressive. Just realize that that's why they are acting that way; because they might not know the answer. If your doctor says you don't need to know that or don't worry about it, again, ask that question again because you want to know that answer; you have a right to know and it is your right to know. You need all the knowledge you can get to make the decisions that you need to make concerning your own medical care. It may be that you must lead the doctor to the EDNF website where much medical information can be found.
3. I shouldn't seek other opinions.
You have a right to make decisions based on those opinions. The way to think of it is that you are paying customer so again, if we're talking about your body as a vessel, if your vessel is leaking or if you were doing a major remodeling on your house, you wouldn't just spend fifty thousand dollars remodeling your house on one person's opinion. You would ask another opinion and again, that is your right. Even if you thought the first opinion on your remodeling or getting your boat fixed was a good opinion, you still probably would ask for another opinion and choose whichever worked best for you for whatever reasons. Some people feel, if I ask for another opinion my doctor who I really do like will think that I don't think he is competent. From my perspective as a health professional, that is not true at all. They really want you to get another opinion; it is fine with most physicians. Doctors do not have a right to fight over parts of your bodies, you know, I'm your eye doctor I can only take care of your eyes or whatever, it is not fair for your doctors to have turf wars over your body.
4. Another myth is that my doctor can cure me.
I think we all are aware, we've seen lots of doctors, that most doctors don't have the answers for everything and there isn't a cure for everything. I think you have to realize that a doctor wants to cure. That's what they're trained in medical school to do; that's part of their Hippocratic oath, to cure and when they can't cure you, it is very frustrating for them too. And again, the behavior might come out in terms of being arrogant or impatient. Recognize that when your doctor is acting that way, maybe it's because she's frustrated that she can't cure you and so instead of trying to come closer to you she sort of backs away. Keep that in mind and have realistic goals for your doctor, sit down and ask what you really want to get out of this relationship with my physician?
5. My doctor knows my prognosis.
This is not true. If you walk into the room and say, â€śI have EDS IIIâ€ť and your doctor tells you, this is what's going to happen to you in five years; this is going to happen in ten years; this is going to happen in fifteen years; go find another doctor. Doctors do not have a crystal ball and as I said in the very beginning, everybody with EDS is different. If you think of it, everybody's life ends in death. That is what life is about; eventual death. Realize no doctor has a crystal ball and they should speak in generalities and give you some ideas what might be in store, but they cannot put a time frame on anything.
6. I have no control over my body.
You do have control over your body. You do have a choice on what kinds of procedures are done and what happens to you. When they look at people with any chronic illness, not just Ehlers-Danlos syndrome, they know that attitude makes a real difference in how you do with your disease. When they look at people with aids, for example, why do some people live well past what the doctors expect and why do some people not do as well? It has to do with attitude and if you have a positive attitude, you can live with any card you're dealt. You do have control over your body and if you assume that I am a sick person model, you will be a sick person. That is not to say that problems that happen are not real problems, when you feel pain, etc., But there are ways where your attitude can help you get out of a stuck mode in terms of pain, or whatever.
6. And finally, I'm afraid of my body. I don't want to know too much.
Knowledge is power, the more you know about your condition, the more you can really make a difference in your care. When a doctor tells you that you don't need to know that; you do need to know about your condition and so ask everything you can. If you hear something that you really did not want to hear then ask for help as to how you can deal with this information, or how can you find out more information to help you deal with it. Because once you know what you're dealing with you can move forward and go on with your life. Whereas if it is a big unknown, that is very scary and it makes it hard to go on.
Some of the other things I want to talk about are some of the things in defense of the physician. They always say the squeaky wheel gets grease. Well, that is true but nobody wants to be around a squeaky wheel either. So try to decide when you are really complaining because you have a valid complaint or when it is because you are fed up with your condition, with all of life and you just need someone to complain to. You need to maintain a fine line between being assertive and being obnoxious. It is a fine line to draw. Speak up, if you don't like something, just say so. For example, if you're waiting on the results from testing from your skin biopsy sent off six months ago and your doctor has not called, call the doctor and say â€śI haven't heard from you yet and I want to know what's going onâ€ť; rather than, â€śI'm going to see another doctor because I haven't heard from them.â€ť Your doctor has many other patients, and if you feel you are his only patient, you probably should get another doctor because your doctor probably isn't very good. Again, if you don't like something speak up. But on the other hand, if you do like something, speak up also.
I can tell you from my own perspective and working with lots of families, if somebody says, â€śboy, I really appreciate that you did thisâ€ť, I'll make sure I do it again, not only for that patient but for someone else too, because it is natural human nature to want to get praise and to do things that people appreciate. So, if you like something let them know, and if you don't like something let them know. And let them know right away instead of stewing about it for a long time. If you go to your doctor's and you had to pay ten dollars for parking, and they were rude at the registration desk, and on and on, complain when you get in the door instead of waiting until the end of the appointment. If you donâ€™t, that will be on your mind for the whole visit and you won't have heard anything the doctor said anyway. So, again, you need to really listen to what you are feeling and tell people about how you're feeling.
Another aspect for the professionals is don't cry wolf. Your health care providers are busy and they are happy to answer your questions but if you are calling constantly, they'll say oh, it's that Robin Bennett on the phone, she calls every day. She drives us nuts. They are not going to be as likely to call you back as if it's I know it's Robin Bennett and she only calls when she really needs something, so I know that's an important call. Let them know when you call how important your phone call is. If you call up and say I have a question for you but it's fine, get back in a day or two, let them know that or if it's really something you need to know right away, let them know that too so that they can help prioritize all the phone calls that they get. I don't want to discourage you from asking questions when you have them, I am just encouraging you to think about when you're asking questions.
In regards to asking questions, write your questions down. When you go to the doctor's office oftentimes you are nervous about being there, your physician is rushed. If you write your questions down you make sure that you get all the questions that you've been thinking about for the last month. You get those questions answered. And when your doctor sees that you have this huge list of questions he'll think boy this person has given some thought to this; I need to sit down and address these questions. Most physicians love to tell you all about everything so, it is good to ask questions.
One other thing; be careful about doctor shopping. You can always find a doctor who will tell you whatever you want to hear. If you really don't want to have an operation, and the doctors say you really need it, you can find a nice doctor who will say you don't need it. Think about what you really need in terms of your health care and when you are doctor shopping because you don't like what you're hearing or because you're not sure what you heard was right. Sometimes if you have several opinions and they keep giving you bad news, it is a good thing just to sit down and say this is the way it is, how can I move forward now that I know that this is where it is instead of saying these doctors were all wrong, I'm going to find a nice one. Again, not that you shouldn't ask for a second opinion, but think about when you are doctor shopping.
One other thing I meant to mention, but I didn't, you should always ask for a copy of your medical records when you see someone and keep your own copies and take them with you when you go see another physician. Or ideally, send them ahead of time so that they're not spending your time reading your records when you go to the office; get it to them ahead of time so that they have a chance to read up about your condition and that can be very helpful.
Finally, I want to say stay in touch. This is important. The best way to keep informed about Ehlers-Danlos syndrome is to keep in touch with the Ehlers-Danlos National Foundation. Get the newsletter; keep in touch with the people you meet at the meetings because they will know whose doing what; what kinds of therapies are working for who, that kind of thing. In addition, the most important thing is just keep a positive attitude through the whole thing, because as I said earlier that's really improves how your health care works. As I mentioned before, you can't always change the cards you are dealt, but you can always change your attitude.