An Opportunity for Kindness
I just read this post: "Response to a Blog Written by a Rheumatoid Arthritis Doctor" from RA Warrior's wonderful blog and site, authored by WEGO Health member Kelly Young. The pre-requisite for her post is to read the doctor's post "Deep Waters"
My post though, isn't about rheumatoid arthritis in particular, but about invisible illness (RA, Fibromyalgia, Mental Health issues, etc.) and treatment from doctors in general. It's my response to Kelly's post and about my sadness, too.
On the one hand, reading this one doctor's post reminds me of the good in the world and that there are wonderful souls out there who want to help patients and to be good doctors. On the other hand, I'm greatly saddened by the doctor, not the author Dr. Conley, but the one spoken of, who's behavior and treatment of a patient with RA was obviously callous and cold, to put it lightly. It seems this kind of perception and treatment of patients with invisible illness is more the norm than it is the rarity. I know that bad news typically travels faster than good, so it's hard to say what kind of ratio we have going of understanding doctors versus the not so nice ones, but why does it seem so heavily weighted? How many stories have you heard about the insensitive treatment given by a doctor to a patient with fibromyalgia for example. I personally cannot even count the number of times.
Upon receiving my own diagnosis of fibromyalgia from a rheumatologist I heard the words, "I have nothing to give you to take your pain away." Translated by a young woman absolutely desperate for relief, the words became: "You will always be in pain." I'm sure he meant, "I am really sorry but I don't have a quick fix, let's try this...blah, blah, blah." But that is not what he said. In fact, I recall saying "Nothing?" And he shook his little head, then offered some medication that perhaps could take the edge off, eventually. Certainly a rheumatologist with extensive training had some inkling of an idea about medications and therapies to help people cope with chronic pain?
I will never understand why a doctor in that position would not try to offer hope and understanding; why a doctor in that position would not try to offer their empathy and would not want to form some kind of a bond with you as you work to establish better health, together? There is a unique opportunity to be had in those times when a doctor is visiting with you about your new diagnosis. They have the opportunity to help you in the process of acceptance and to help you see the possibility of good to come. That's an opportunity I think all doctor's would enjoy embracing, to be a part of that and to shed some light on a dark time for a person is a gift they can give themselves, that will be rewarding for all involved.
Perhaps, at some point, a physician or therapist will read this post and see the potential there is in this small window of time, the time when their patient is looking to them for help.
I would love for you to share this post with your community. First and foremost I ask that you read Kelly's post linked above. It is passionate and moving and is beneficial for anyone who deals with a health condition that is often considered "invisible".
My post though, isn't about rheumatoid arthritis in particular, but about invisible illness (RA, Fibromyalgia, Mental Health issues, etc.) and treatment from doctors in general. It's my response to Kelly's post and about my sadness, too.
On the one hand, reading this one doctor's post reminds me of the good in the world and that there are wonderful souls out there who want to help patients and to be good doctors. On the other hand, I'm greatly saddened by the doctor, not the author Dr. Conley, but the one spoken of, who's behavior and treatment of a patient with RA was obviously callous and cold, to put it lightly. It seems this kind of perception and treatment of patients with invisible illness is more the norm than it is the rarity. I know that bad news typically travels faster than good, so it's hard to say what kind of ratio we have going of understanding doctors versus the not so nice ones, but why does it seem so heavily weighted? How many stories have you heard about the insensitive treatment given by a doctor to a patient with fibromyalgia for example. I personally cannot even count the number of times.
Upon receiving my own diagnosis of fibromyalgia from a rheumatologist I heard the words, "I have nothing to give you to take your pain away." Translated by a young woman absolutely desperate for relief, the words became: "You will always be in pain." I'm sure he meant, "I am really sorry but I don't have a quick fix, let's try this...blah, blah, blah." But that is not what he said. In fact, I recall saying "Nothing?" And he shook his little head, then offered some medication that perhaps could take the edge off, eventually. Certainly a rheumatologist with extensive training had some inkling of an idea about medications and therapies to help people cope with chronic pain?
I will never understand why a doctor in that position would not try to offer hope and understanding; why a doctor in that position would not try to offer their empathy and would not want to form some kind of a bond with you as you work to establish better health, together? There is a unique opportunity to be had in those times when a doctor is visiting with you about your new diagnosis. They have the opportunity to help you in the process of acceptance and to help you see the possibility of good to come. That's an opportunity I think all doctor's would enjoy embracing, to be a part of that and to shed some light on a dark time for a person is a gift they can give themselves, that will be rewarding for all involved.
Perhaps, at some point, a physician or therapist will read this post and see the potential there is in this small window of time, the time when their patient is looking to them for help.
I would love for you to share this post with your community. First and foremost I ask that you read Kelly's post linked above. It is passionate and moving and is beneficial for anyone who deals with a health condition that is often considered "invisible".
Views: 8
Tags: FM, RA, chronic illness, diagnosis, fibro, fibromyalgia, invisible illness, physicians, rheumatoid arthritis, therapist
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Comment by Amy K on July 9, 2010 at 10:14pm -
Thank you Gordon, for taking the time to read these posts, and commenting, too!
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Comment by Kelly Young on July 9, 2010 at 11:35pm
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Thank you, Amy. I know too many docs like that. I had tried to stick to the facts in my posts on this one, so I got some satisfaction reading yours! Hear myself saying YEAH!
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Comment by Amy K on July 9, 2010 at 11:42pm
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I'm so glad it gave you that feeling Kelly. I am most appreciative of your post that moved me to write this one!
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Comment by Ellen S on July 11, 2010 at 2:17am -
I read Kelly's post and tweeted about it too. On one hand she eloquently said so much, I couldn't really think of anything else to say... but then again, I keep thinking about things I could have or would have said. I suppose it comes from the frustration of having had some real loser doctors that really have had no business around living people. Thankfully, I've had some of the very best doctors as well, but honestly, in the back of my mind is always the fear now that the next visit is going to bring another bad experience.
I really feel that patients like the woman in Kelly's post are going to become more and more frequently found. Not because their desire for power, but because they're realizing they have a responsibility to be proactive, educated patients. They're interested in their health care, and for the first time they are finding they can do something about it. I pray that the day of the dishrag patient is finally over! As we are more able to educate ourselves, the way we look at our doctors and our health care is going to change too I think...
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Comment by Amy K on July 11, 2010 at 2:41am
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I agree Ellen! When I read of the woman with her large notebook filled with health records, I instantly thought "Good for her! If only I could be so organized!" At some point, the effort we take to be empowered will hopefully be acknowledged as the "proactive, educated patients" that you spoke of.
Kelly's post really does say it all, but I think it is important to draw attention to this issue outside of the RA community and to the Invisible Illness community as a whole. These experiences could likely be snapshots taken by interns facing patients with mental health issues, fibromyalgia, CFS/ME, etc. The list goes on...
Holding on to hope for changes to come and more positive doctor-patient experiences in the future!
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Comment by JennyPettit on July 11, 2010 at 3:26pm -
Amy, I still have to go read the links you posted, but while I was here I wanted to let you know about "UII - Understanding Invisible Illnesses", basically about/inspired by my experiences just like you mentioned, and a desire to reach everyone with invisible illnesses regardless of specific diagnoses because we all face the exact same attitudes. Look for us on Facebook, and/or check out my blog (www.myuiiblog.blogspot.com). If you want (and give your permission), I can repost your post here on my blog.
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Comment by Amy K on July 12, 2010 at 8:30pm
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Jenny,
I would be happy for your to link to or repost this post at Understanding Invisible Illness as long as you will link back here, to WEGO Health as well!
I look forward to learning more about UII. It is so great to meet other health activists like yourself. Thank you so much for taking the time to comment and your interest in this post.
Gordon,
I agree with you, empowering patients with more control over their electronic health records will take so much of the burden off and the fear of being considered "over the top" because someone cares enough about their health to document and organize it. Good for you for bringing this up and also for taking such good records, yourself. I am glad you had a positive experience with that!
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Me too, Ellen. I stuck my purpose for that blog, but I could go on & on about the injustice & the arrogance I've seen...
There was a doctor who threw a space heater . There were numerous accusations of malingering before I was finally diagnosed. Other family members w/ malpractice...
Sometimes, I say could write a book about the things doctors have done to those I love & readers of my blog. That's what I wrote a yr ago when I began this journey. Then I decided my goals & that I'd spend my energy for positve change.
I guess we are realizing that part of that might sometimes be revealing the negative atmosphere that is present now in many places. It really does feel sometimes like we patients are the inmates asking for the keys. It's empowering to read your posts, speaking as if what the women w/ the notebook did was normal & good!!
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Comment by JennyPettit on July 14, 2010 at 9:08pm
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Hey Amy, just FYI - here's the post I put on my UII blog linking back to this post of yours here on WEGO, as you requested:) At your (wise) suggestion, I made sure to explain WEGO Health in the process. Thanks!
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