I have, since starting this blog, tried to stay positive in it's content and approach, but there is something that keeps bugging me that I want to address. I have thought about this for several weeks and with several appointments with new doctors and clinics looming on the horizon, I think it time to say something.
There is a great pool of knowledge out there among health care providers, from LPN's through the most knowledgeable doctors. They know of what they speak for the most part and only a few forget from time to time that we patients may not know how to understand what they are saying. At that point it is up to us to tell them to slow down, take a breath, and translate what they are saying into something that we can understand. But this is not what I am concerned about.
There are those that want to tell us what we are feeling or going through, even though that might not be happening with us at all or we have skipped over certain things in the "normal" coarse of a disease. For example, I did not go through the five stages of grief associated with learning that I have an incurable disease in ALS and will certainly die of it in the oh so near future (relatively speaking when the the average life expectancy is 78.84 years according to some studies and I am now only just shy of 58). I am not talking about that either.
There are those professionals who, learning that I can no longer speak, want to do as many "civilians" do and slow down their speech and treat me as a grade schooler in dumbing down what they say, or as I had one nurse practitioner do to me recently, lean in and make sure she had eye contact with me every time she said anything as if I was relying on lip reading to understand what she said. Needless to say I was not impressed. However, I am not even talking about that.
What I have a great deal of trouble with are professionals not talking to me.
I am a fairly intelligent individual, having graduated college in a total of eight semesters with a dual major many years ago when a college degree still meant something beyond a stepping stone to a higher, post-graduate, degree. I was even able to learn how to fly a helicopter in the Army. But for some reason doctors, nurses and others all want to address whom ever I am with instead of talking to me. They ask me how I am feeling and then take the answer from my wife or daughters instead of having patience enough to let me answer for myself. If that is not enough they then tell my escorts what is going to happen with my treatment instead of talking to me.
Yes, they can and should know what is going on with me and what my treatment is going to entail from that visit to the next, but I am the patient. Only I know for sure what is going on with my body and how I actually feel. Only I can tell you if a course of treatment is going to mesh with what I can do and want to continue doing or not. Relatives want only to protect us as much as they can and have our best interests at heart. I realize this. But even they do not know what the patient really is thinking or can really do on a daily basis.
There I've said it! I have ranted and raved all that I need to. I am sorry that you, the reader, have to see this side but I needed to say it.
Until next time.............................
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