Like most of you that might read this blog, I could list "patient" as my occupation. Not that we are hypochondriacs (far from it) but we often suffer with multiple health issues. Besides general health problems like colds, flu, aches and pains most of us also deal with sleep problems, diabetes, heart conditions, arthritis, and the list goes on and on and on. With that said, we also meet with many different doctors; not only different because of the actual health issue but different in how they relate to us as patients.
Personally, I have had great doctors, blah doctors and witch doctors. (Not really but they sure didn't help either!) Some doctors have listened and helped. The best doctors not only listen but they ask questions too. The best question they can ask is "Do you understand what we have discussed?" Bad doctors are....bad. I actually had one doctor tell me that I wasn't as dumb as I looked after I asked several "intelligent" questions. That was the last time I went there. One sleep doctor listened intently while I told about my problems using my CPAP machine. He then proceeded to tell me that he used a machine too and that cleaning his mask with lavender dish soap helped him go to sleep easier. That wasn't my problem.
I hear quite a few people make complaints about doctors who don't listen, who don't seem to care, who don't take any time for them, who have a "god" complex, who just don't understand. Others tell me about doctors who truly are great, who listen and take time for questions, and who just seem to really care. So I started thinking about the differences and realized something amazing--doctors are human beings, people just like us!
If they are human beings, then they have attitudes, likes and dislikes, preferences and outside lives just like us. But as patients, we expect them to leave all that outside the office door. We all have a picture of what a doctor should be; kind, caring, never rushed and always with an immediate answer for us. And many of us grew up with the notion that the doctor is always right and never to be questioned. So right at the beginning, we have set doctors up to fail because they aren't perfect as we think they should be.
So here is the true point of this blog. Things are changing. Patients want to be more involved in their health care decisions. Some doctors are fine with this and some feel threatened. A lot depends on how patients approach this change in the medical field. I am a HUGE proponent of patient education. We are the only ones who really know what is going on with our bodies and minds. Because of this, it is our responsibility (yes, responsibility) to become educated about our health issues. Research, read, learn from reputable health sites and people. Make sure you know what you are talking about or write down questions to ask you doctor when you don't understand. It is up to us to become the other half in the partnership between patient and doctor. Always be respectful, never overbearing or rude. Act the way you want your doctor to act. Remember that you are dealing with another human being. Let your doctor know that you want to have a working relationship that will benefit both of you. If said doctor does not want this also, it is up to you to decide if the care you are receiving is good enough to stay anyway.
Bottom line is this--WE are the ones ultimately in control of our health. We need to know what things to do or to avoid, who will help us the most, and how honest we are with ourselves about our health. That means knowing what we are dealing with--which may be as important as who we are dealing with. Become educated and build a relationship with your very human doctor. It can only help!
(I encourage feedback and comments!)
Very true with what you say. Based in the UK, the majority of doctors are unaware of the damage sleep apnoea can cause, but research into sleep and sleep disorders is only just started to be notice in the last few years with more TV programs and newspaper articles educating the population on the importance of sleep.
But when it comes to paediatric sleep apnoea, this is where it is way behind the States. It is that bad, you get doctors who laugh at you when you try to explain that obstructive sleep apnoea can lead to ADHD like behaviour, or you get ENT consultants who tell you that as a parent, I know more about paediatric sleep apnoea than them - which doesn't fill you with confidence.
But there are doctors who are willing to listen and ask questions. But one thing I have learnt, is always be prepared with your research from a reliable source, and if you have any corresponding letters or emails from an expert in their field supporting your research, then the good doctors will listen whilst the bad ones will make some excuse to fob you off.
So have supporting evidence when you raise your concerns to the doctor, and find a doctor who listens to you. Don't give up until you are satisfied with the outcome.
At the end of the day we can only move forward if we work together. The more we get involved the better for the community. The internet is a very powerful tool, so use it to educate yourself and educate others. Because doctors are only human, they only know so much!
I agree completely. Your health (or the health of your child) is paramount. If you have a doctor that will not listen or help then it is time to find one who will. Taking correspondence or letters from reliable experts to your doctor is a great idea. However, there will be doctors who go on the defensive when you do this--time to move on then. Thanks for your reply!
My newest Doc did not review the best data available before recommending new equipment. She never looked at current data on my CPAP (90 day record), nor data I have kept for 5 years to show trends. Used a 2 yr old sleep test and one night record from a recording pulse ox (which I provided from my equipt).
She used the result of one night of sleep testing to diagnose I needed a new mask. (I have only two leak events recorded on my CPAP in 90 days) It is likely I pulled it off during the test due to puffs from her new machine that were out of synch with my breathing pattern, or the slip knot on my old strap probably loosened during the night with repeated checks on the glue in my hair. I do need a new strap (adjustable preferably), but don't need a new fitting. I use nasal pillows which seal 100% if the strap is right.
How I feel about her, and whether she had a bad day or not, are irrelevant. I think these are objective observations I have made. I consider this lazy and incompetent. I won't be going back.
When I had Afib, the docs were just going to put me on heart drugs. I had to insist on testing for root cause, which came down to bad settings on the CPAP causing increasing central apnea events.
You raise a valid point and one I didn't stress in my blog, so thank you for posting. I totally agree, there may come a day when you realize that it is time to find a new doctor. Relationships need both parties wanting to work together and that may not always happen. Only you know your body and how you feel. I still believe every person needs to be educated about their illness if only to be able to ask questions and voice concerns--or question the treatment you are receiving (or not receiving).
My blog was more for people who wanted to build a relationship with their doctor; to remind them that there could be off days. Your experience is very different and you brought that to my/our attention. Thank you for your post and I truly hope you find someone that will work with you and that you find relief.
What insightful comments! Your post also reminds me that there are many styles and different expectations--both regarding patients and providers. Perhaps each patient-provider should consider a conversation on what they each expect from the relationship, and come to an understanding on how involved the patient wants to be, and what is expected of the physician. As you point out these are relationships, and relationships can benefit when there is a good match/understanding of mutual expectations.
I have been using CPAP and BIPAP for 20+ years. Up to 10 years ago I went fairly regularly back to DRs. Then I gave up as the DRs seemed to not help. Now I survive on less than 6 hours per night. I am sleepy every day can not read at times more than a paragraph without dozing off. I give up!