Dear Bridget Duffy from a Rheumatoid Arthritis Patient
Bridget Duffy at Gel Health 2009 from Gel Conference.
Dear Bridget,
I was truly stunned when I came across your speech. Your story produces intense reaction from a woman living with Rheumatoid Arthritis. RA is primarily an invisible illness. It can cause a person to be severely disabled quite suddenly and need help from medical professionals desperately. Here are a couple of my responses to your talk.
The mother analogy about hospitals made me smile. I have been sharing my own “Golden Rule for Doctors” for a long time: Treat your patient as you would want your mother to be treated. I think it is effective because doctors can seem to have a hard time imagining themselves as patients.
I once said that I could write a book of stories about improper ways the people respond to those who live with RA. Family members, co-workers, and church members, hopefully without realizing it, can bring a lot of pain to those already suffering physically. They may squeeze tender hands, require too difficult tasks, or make insensitive comments. However, doctors are the worst because that is where the RA patients turn for answers and help.
My complaint is not that patients are denied sympathy, although they often are. It is that they sometimes cannot receive physical assistance and accommodations they require – or often even diagnosis and treatment – due to the very nature of Rheumatoid Arthritis. Early in the disease process, there can be little or no visible evidence of RA. Diagnosis can depend upon the doctor’s willingness and ability to listen to a patient’s specific description and history. Blood test results tend to be normal for a considerable percentage of patients, especially in the early stages of Rheumatoid Arthritis.
Patients are literally at the mercy of their doctors. Many times, I have been told of doctors telling patients that the amount or type of pain and disability which they describe is not even possible and suggesting psychiatric care. This is especially devastating because early and aggressive medical treatment is the only hope to fight disability and death caused by Rheumatoid Arthritis.
If you hang around RA patients for even a little while, you will hear someone ask whether there isn’t some doctor somewhere who actually has severe Rheumatoid Arthritis herself so that there would be someone trustworthy to tell the story. They hope that after the truth is told, there could be changes that would change or save lives. Once, I even daydreamed of loaning one day of Rheumatoid Arthritis to the top doctor at the American College of Rheumatology since I thought that would “do the most good.”
Since I cannot do that, I decided to try to tell the story myself by writing this RA blog with its three humble goals, described on my Welcome page. I hope doctors will take advantage of learning about Rheumatoid Arthritis without having to pay the price that I paid for this knowledge. I hope others in the health care profession will realize from your talk and from my blog that we are all people who might need proper treatment ourselves someday.
PostBlog: The video is 26 minutes long. I don’t know how many of you will have time to watch the whole thing now, but maybe play it and listen while you do something else. I found the last few minutes valuable.
Recommended reading:
- What Is the First symptom of Rheumatoid Arthritis?
- Medical Records Tip for Your Rheumatoid Arthritis History: Read the Doctors’ notes
- American College of Rheumatology Redefines Rheumatoid Arthritis
ty for sharing this and your comments. hope you sent them there?
im not listening to everything b/c im just too tired but so far, I like it.
It’s so true what she says about how when u have a obvious disability, you become invisible…. ive been rushed over so many times while in my scooter or on my walker. I’m amazed at how ppl act and esp those in the medical profession.
one of my favorite ” ” is the nurse at my health care clinic that would ask my friend pushing me in my wheelchair if i wanted to be weighed.. as if i couldn’t answer for myself? really? wow
Your comment about doctors responding that your pain cannot be THAT bad or insinuating if not outright accusing you that your symptoms or pain levels are related to psychiatric concerns.. arg… this esp. happens when you’re female!! But.. wow.. that happens so much.. it’s just unacceptable and painful…
I have not sent it on yet, but I plan to try as hard as possible to get her and others in the health care profession to read the letter… and watch her video.
Wow. Not sure what else to say. First time I’ve ever seen a medical person address those issues – and obviously wouldn’t have had she not found herself unable to get around. Love your response.
This video is AWESOME. I’m going to see if I can share it w/ fellow health care workers.
Bridget Duffy is on my list of HEROES as of this moment!
What most people don’t realize, unless they are healthcare workers, most of the facilities have YEARLY training on keeping the focus on the patient experience and how everything that you do is FOR the patient. But, being a “chronic” patient, I know that this isn’t always the case. Nursing staff and doctors have so many rules and regulations and see so many patients each day…that patients truly become numbers…medical record numbers, the nth patient seen that day, reimbursement numbers…
I can completely sympathize with what she and her husband were told when they pulled up to the hospital and were looking for a wheelchair. I had taken my mother in law to the hospital for an xray last week to see if she had broken her hip again. I pulled up to the front and left her in the car while I went inside to look for a wheelchair. THREE people told me where to get one, and not one offered to get the wheelchair for me or asked if we needed assistance in helping Jeanette out of the car. I didn’t need help (this time) or else I would have made a fuss (and trust me, they don’t want me to do that again).
Thank you so much for sharing this!!
I sure hope her ideas spread & take hold!
I totally agree with everything above, but I did have one other thing I wanted to add. I was shocked when I read, “Once, I even daydreamed of loaning one day of Rheumatoid Arthritis to the top doctor at the American College of Rheumatology since I thought that would “do the most good.”, because I have also had thoughts, but mine were far more “severe” (for lack of a better word).
I’ve had recurring thoughts of “loaning” my RA to my rheumy and to family and friends, but for much longer than a day, and with no “known” end in sight (for them).
I’ve never wanted to wish it on them long-term. I wouldn’t do that! I’ve just wanted them to be able to truly know what it’s like, not just to feel the physical feelings of what it does, but also, the emotional toll it takes, or “has” taken moreso since I’ve become more accustomed to it as time has passed, and thanks be to God, have had a much better attitude.
The horrible pain on its worst day, of course, but also to not know if it’ll EVER be better than it is at any given time…to be in total despair because of the feeling of being completely and totally alone no matter how many people are around…knowing I’ll likely die younger and go through God knows what between now and then…these are things I’ve wanted to “loan”.
One day is nowhere near enough! A person can’t have any concept of it unless they experience it for a minimum of a month, during a flare, with only me and God knowing when they can give it back.
Geez! I’m starting to feel like one of those people who enjoys inflicting punishment upon others, but that really isn’t me. I promise!
I just want them to know what it is and how it feels, physically and emotionally, so they’ll be a tad more empathetic. I think y’all know what I mean. =)
Tawnya, did you go to the link? Those words are linked to another post called the Rheumatoid Arthritis Curriculum where I joked / daydreamed about loaning out RA… There are more comments there on that. A couple of people thought it was just too mean of an idea. I really did believe that it might do some good… Guess you get it.
I too have had all the bad patient experiences, but wanted to give credit to one place that did everything right: I had my first child at a hospital “designed by women, for women, run by women”, Linkwood Clinic in Johannesburg, South Africa. In my country this was a totally radical approach at the time, but it was a wonderful, uplifting, empowering experience that I will always treasure. The staff were caring and helpful, were wonderful with supporting me through my premie second child’s NICU experience and our whole family has walked away with gratitude and respect for these wonderful caregivers. ….. Now if I could just have that experience recreated for my RA not just for a birthing experience, after all, I know it is possible, I’ve seen it done by some medical angels!
Kelly, your response “open letter” comes at a time when I was about to walk into my rheumatologists office tomorrow and tell him I think I am crazy because the pain is just so bad. To see you write about people receiving psychiatric care because doctors think they are crazy along with the rest of your letter validates that the pain is NOT in my head but in my bones and joints, causing damage, damage that cannot be reversed and must be treated immediately and aggressively. I to wish that I could will my AS to a doctor, a rheumatologist preferably so that they could walk or even TRY to walk in my shoes, just even across the room!! It is an outrage that so many of us have not been treated properly by doctors, nurses and staff, that our symptoms and pain is dismissed and we are at the mercy of anyone who will listen and believe us. It truly is not fair. I pray that you send this letter to every person who will listen, it is long overdue for doctors all over the world to have a wake-up call.
Thank you Kelly for your beautiful, strong and honest words.
I watched the video and think that this should also be somehow tied to the current health care reforms that are being made at this time. The truth is we pay for the insurance that pays the bills on this care. As consumers we should be looking at this as OUR money to spend. What are we spending our health care dollars for? Mistreatment, misdiagnosis and mismanagemnet of our health. We are constantly at the mercy of a system that is very broken. How many other things out there would you pay for if they offered this bad of service or the attitudes that the medical profession has show us?
Julie,
Yes, we the patients ought to be the “customer” but the system puts someone (many many someones) in between the doctor & the patient/consumer. If I had nothing else to do, I could write books about mistreatment and sad results in my own family. The poor attitude or lack of compassion is usually overlooked because we know we feel we have no choice anyway, but too often even poor listening can actually lead to poor care…
Wow, this video has me in tears. It just hammers home what we all know,that healthcare shouldn’t be about money, insurance and cost but about the human being beind the illness, pain &/or disablilty.
I’d like to share a short story of someone who does do their job incredibly well and with great compassion.
I lost my Mum on Febuary 14th of this year. We are lucky enough to live in a very small town in the UK and a few weeks after Mum’s passing I went to see one of my usual nurses for my blood draw. Now both of my nurses also treated my Mum over the years, she was diabetic. We would often tie our apts in and wait together to see the nurses there, and as this was my first visit after losing her I was already fighting back tears in the waiting room. As I opened the door to the nurses room, she looked up & immediately asked me how I was doing, to which I burst into tears. She was there in a milisecond with her arms around me, comforting me the way a Mum would do. She made such a difference that day & I just wanted to share a good story.
I think Bridget sounds like an amazing women & I love your response to her Kelly. I truly hope that people like her & like you can make a long term difference to how patients are treated.
Gilly, I’m sorry about your Mum. :heart: I’m glad your nurse showed you compassion. We are all people – it should be more like that.
Thanks Kelly 🙂
Difficult to find truer words or sentiment. Your blog is restoring my faith in humanity and trust in my own experience. Thank you.