I was forwarded this letter from someone else, so I cannot give you the original source, but when I read this letter, it just made so much sense to me. I hope it gives you some sort of knowledge and/or comfort, too.
http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/
Brilliant. Its easy to forget that doctors are just humans too.
Outstanding.
What I wished had been addressed here is; does my doctor want me to bring him the latest research papers on my chronic disease? I don’t expect ant of my doctors to be an expert on Gluten Ataxia and I’d like to provide him/her with what I’ve found. Not patient testimonials, but real medical research.
I was at university with several doctors.I saw them as young men and women.
It is a good article however.Although my doctor knows little about my brand of Ataxia I am always treated as an intelligent,self aware person.He always refers me to the specialist when he doesn't know and helps whenever he can.
He signs the re;levant documents and trusts me .
It is good to remind ourselves that doctors can be fallible but they have to know a bit about everything.I think sometimes we hold them in awe and expect them to come up with some sort of answer. What pressure!!!
Nice to hear a doctors perspective.
Bravo! great article. I always confront them when they come in the door. If you are from the US we have a wonderful TV personality who has had several bouts with cancer. She went to her new doctor in her new location. He did an examination and was leaving when she told him about a lump in her breast. She is still hangin in there. Tell them and be up front with all.
Ran
This letter is great. Thank you for sharing it.
I am lucky to have wonderful caring doctors. I have another rare genetic (heart) condition diagnosed over 20 years ago and my doctor admitted he knew very little about it and asked me to give him any information I could find about it as he said he did not have the time to read all the medical papers he was bombarded with daily. I had great respect for him and he had great respect for me. He always took his time and what is also very important, he made sure I was physically AND mentally well.
What gave me some inspiration from this letter is that it reminded me that doctors are still 'just' humans (albeit very smart humans). It reminded me that sometimes I do 'know' more than the doctors. In my case, my experience has been trying to explain to doctors what my little daughter was feeling....I didn't know from personal experience....I had to do my best to describe what I would see and what I suspected she must experience. The article reminded me that I have been given a 'mommy's intuition' when at times the doctors did not believe me (or at least, appeared not to believe me). But looking back over the past six years, I always knew that something wasn't quite working 'right' for my daughter's body......and I knew it had something to do with her brain.
I feel fortunate that for the most part, we have a team of amazing doctors helping organize the best care for my daughter. I know that for many people that is not the case or it does not happen for many years. I have experienced that myself and have heard way too many stories from others about the doctors not believing them.
I do believe that each one of us has been given this disorder to help be a 'voice' so that others might not have to struggle as long as we have. Each one of you have so much to teach doctors and me :)
Never dismiss your intuition, for your child or for yourself. We know when something is not right. We do not have to be arrogant or forceful, but we need not give up and be gently insistent.
Glad you have good doctors for your little girl. I know as a mother myself and a grandmother now, how hard to have a sick child. My very best wishes to both. To her for good health and to you for great courage.
This is GREAT ! Thank you for posting this. I used to cut allot of Dr's hair and while they sat in my chair I can't tell you how many said many of the same thoughts this Dr put on paper.
Great thoughts for all of us and great reminders too! You get more Bee's with honey than S_ _ t! hahahahahaha so being nice works well! I was told be dumb like a sly fox.
This sure was well written! Thanks! :0)
Great letter! I shared with my spouse, who understood better what we live with. I was diagnosed with gluten ataxia 12 yrs ago by a neurologist at a famous clinic here in USA. He came to that conclusion after testing eliminated all other diseases. Annual MRI s show no progression, although fear of falling led to using a 3 wheeled walker full time . 3 weeks ago I fell and broke my elbow trying to navigate cobblestones in Copenhagen! It was near the end of a grand tour…seems most of Europe is paved in cobblestones.
Am really enjoying all your stories and comments. Thanks. Sharon in Az
Sorry to hear about your elbow. Ouch! Other than breaking a bone, hope you had a great time visiting Europe.
Gfgirlo1 said:
Great letter! I shared with my spouse, who understood better what we live with. I was diagnosed with gluten ataxia 12 yrs ago by a neurologist at a famous clinic here in USA. He came to that conclusion after testing eliminated all other diseases. Annual MRI s show no progression, although fear of falling led to using a 3 wheeled walker full time . 3 weeks ago I fell and broke my elbow trying to navigate cobblestones in Copenhagen! It was near the end of a grand tour....seems most of Europe is paved in cobblestones.
Am really enjoying all your stories and comments. Thanks. Sharon in Az