The following article was written by David Biundo to his friends and fellow patients. The message came from a conversation he had with his doctor. I hope you’ll find it inspiring and enlightening as I do.
The challenge of being believed
One of the challenges that many patients with chronic illness face, is the treatment they receive from some in the medical community. In my conversations, tweets, emails and Facebook notes with other RA patients, I have been disturbed to find out how many have difficulty having health care professionals believe them when they are hurting or in need of treatment. In most of these cases, the patient’s own testimony as to their symptoms and what is happening inside their bodies is just dismissed. There are some cases where additional diagnostic testing or simply being informed could help, but this is not what is happening to some. Both Melissa and I have been on this side of road. In Melissa’s instance, it meant something that could have been easily fixed but turned into major surgery with unbelievable complications and post-operative infections. In my case, it meant being told I was depressed and my pain was due to this. In each instance, if the medical professional would have not dismissed us as patients and our symptoms, treatment could have been started sooner and at a much lower cost. Thankfully we did not give up and our family doctor kept fighting for us until we got the answers we deserved.
The covenant between a patient & his doctor
I am fortunate that I have a very special relationship with my rheumatologist. As you have read previous notes, you know that his care and support have helped to keep me on the path to find the answers we need to treat my condition. After my nerve block was performed, I had an appointment to see him to track the progress of the nerve block. When the doctor walks into the room the first thing he says to me is he is sorry. I asked him why, and he said it has been a very crazy day with several emergencies that came up that just needed attention. He asked me how I was doing and I told him that the nerve block has definitely made progress on one type of the pain. He was relieved to hear that. He told me that he woke up at 3 am this morning worrying about me. I was touched and asked him why? He stated that he has yet to relieve my suffering. Relief of suffering of the patient is paramount to his practice. It is not only treating the disease, but also treating the overall condition of the patient.
As we continued to talk, I expressed my gratitude to him for continuing to search for answers for me in my treatment. I was a very difficult patient to pin down with a diagnosis. With the exception of a positive Rheumatoid factor, I had no other outward signs of this disease nor did traditional diagnostic testing confirm RA. It was because of his belief of what I was telling him were my symptoms, that we went with unconventional methods for diagnosing, like the use of the nuclear bone scan. I shared with my doctor some of the stories that others have shared on rawarrior.com or through twitter. How their rheumatologist dismisses them and how they leave no better and often in a much worse state than they were before. This is when my doctor began to speak of what he calls the covenant that needs to exist between a patient and their doctor.
The covenant is to not only treat the disease but to also treat the patient and their overall condition. He said the problem today is there are still too many people in the field that see this as a way to create a lifestyle, not as a way to relieve pain and suffering. He also stated that you have big business involved and while there are benefits to this it is not always a good thing. He did say this though: it is changing. What he is seeing coming up with some young doctors today is that passion for the patient again, the ones who are getting into medicine because of the human factor and wanting to do something about the suffering. As we wrapped up our conversation and I thanked him for our partnership, he stated that it is the way it works the best. Oh and he did apologize again, this time was for needing a haircut.
The future of medical treatment is definitely rooted in values established in the past.
- Values and oaths that were sacred and established a long time ago never go out style. They are as important today, if not more important. Yes, I am referring to the Hippocratic Oath.
- A covenant must exist between the patient and the physician, meaning both respect each other as individuals and professionals and provide open and honest dialog to each other.
- The doctor/patient relationship has entered a new age. It is an age where the patient is more knowledgeable about their condition than ever before. It does not make the patient more knowledgeable than the professional. It arms the professional with one more tool to treat the patient. When these two work together, the empowered patient and the medical professional, the outcome potential could be unbelievable. I am experiencing this in my care regularly and it is where it has to go for everyone.
- No-one knows better about what is happening currently than the patient himself. This should not and must not be readily dismissed without proper consideration.
- The patients’ increased knowledge does come at cost if it is not presented to the professional in the correct manner.
Yes the future is rooted in the past, rooted in the respect the patient has for the professional and the professional’s respect for the patient. That is the history of medical care and it is also the future.
Postblog: Promoting awareness
For those of you who are my Facebook friends, and those of you who are my new friends through Twitter, you have come to know that I when I write these notes, I am writing about my experiences as individual with a chronic auto-immune disease. My perspective is also unique because, not only do I have the role of a patient; I am also the spouse of someone with an auto-immune disease. So to say that auto-immune, chronic illnesses have impacted our life is an understatement. The reason I write these blogs, is to educate others who may not understand or comprehend the complexities of these types of diseases. While I can count the number of these blogs I have written on two hands, I have been inspired by the work of Kelly Young, who has written hundreds of blogs, educating, counseling and increasing the public’s awareness of the perils of Rheumatoid Arthritis. Her blogs alone have given me more knowledge to fight my disease than I could ever hope to have found on my own. So now I write in order to get the word out, share her message and increase the advocacy in the smallest way. If 200 more people are aware, then we are winning. We are launching the first non-profit patient foundation for Rheumatoid Arthritis patients: the Rheumatoid Patient Foundation is at the forefront of patient advocacy. Its goal is to improve the lives and the treatment of those with rheumatoid disease.
NOTE: David recently repeated his nerve block since the effect only lasted two weeks. His doctor is working with him in an aggressive treatment plan to address his severe disease activity. We’ll post an update on his story soon.
- The Path of Mercy in Medicine: A Tale of Two Doctors
- David’s last post: Excellent Rheumatology Care with a Horrible Rheumatoid Disease
- Another family’s story: Living with a Spouse with Chronic Illness, part 1