Ted Talk: What Happens When You Have a Disease Doctor's Can't Diagnose
Oct. 7, 2017
This week while looking into a research lab at the NIH that I am looking to work in after graduation, I have been more than ever excited to look at patients with rare diseases. These are the patients who not only have chronic, life-long illnesses, but there is little-to-no knowledge on the illness. Treatments and therapies are scarce and research funding goes to the diseases more common to the public, like cancer or HIV. A bias exists towards the patients who's awful disease is pushed off as hysteria, with their diagnosis being "crazy."
All patients are to be treated with the same diligence from their physician, even if the disease cannot be seen physically. Physicians are afraid to say "I don't know," because they fear the repercussions. For these patients, saying "I don't know," is better than attributing their pain to hysteria, or a mental disease, especially in the case of women. Women with these rare diseases are seen as "crazy, hormonal women," and their pain is neglected. This is the bias. While women tend to have irregularities in their hormones, not all pain they experience can be assumed to be from this. Patients understand their bodies better than any healthcare provider, and as future workers in this field, we need to understand how to listen to patients, because thats the only way we can truly make a difference. As patients, we need to understand how to be self-advocates and continue fighting until someone listens.
Being able to admit defeat as a physician is not easy, but it is the only way to expand science and medicine. Being afraid of the unknown does no good. Without scientist B.J. Marshall self-administering H. pylori, and exhibiting gastritis, which he proceeded to treat with antibiotics, stomach ulcers would still only be attributed to stress. Patients suffering from this disease would not be able to get treatment, and they would be sent home being told to "relax."
While your mind can do wonderful and awful things to your body, most have a true biological cause. Research funding and interests should address all diseases, whether they are unseen by the human eye or not. They do exist, and these patients deserve the same help from scientists and health care providers.
Learning about healthcare leadership, it is these individuals who can create the transformational culture needed to adopt these changes. Administrators need to see the importance in these rare cases and not treat them any different than someone who has cancer. Financial aid is just as crucial in these circumstances, and public awareness needs to be done as well.
Going into this field, we plan to help patients in the best way possible, and sometimes that could just be believing their stories. Do not pass judgement just because you cannot see their pain, or detect a reason for the pain. Just listen and understand and promise to do the best you can to help.
This week while looking into a research lab at the NIH that I am looking to work in after graduation, I have been more than ever excited to look at patients with rare diseases. These are the patients who not only have chronic, life-long illnesses, but there is little-to-no knowledge on the illness. Treatments and therapies are scarce and research funding goes to the diseases more common to the public, like cancer or HIV. A bias exists towards the patients who's awful disease is pushed off as hysteria, with their diagnosis being "crazy."
All patients are to be treated with the same diligence from their physician, even if the disease cannot be seen physically. Physicians are afraid to say "I don't know," because they fear the repercussions. For these patients, saying "I don't know," is better than attributing their pain to hysteria, or a mental disease, especially in the case of women. Women with these rare diseases are seen as "crazy, hormonal women," and their pain is neglected. This is the bias. While women tend to have irregularities in their hormones, not all pain they experience can be assumed to be from this. Patients understand their bodies better than any healthcare provider, and as future workers in this field, we need to understand how to listen to patients, because thats the only way we can truly make a difference. As patients, we need to understand how to be self-advocates and continue fighting until someone listens.
Being able to admit defeat as a physician is not easy, but it is the only way to expand science and medicine. Being afraid of the unknown does no good. Without scientist B.J. Marshall self-administering H. pylori, and exhibiting gastritis, which he proceeded to treat with antibiotics, stomach ulcers would still only be attributed to stress. Patients suffering from this disease would not be able to get treatment, and they would be sent home being told to "relax."
While your mind can do wonderful and awful things to your body, most have a true biological cause. Research funding and interests should address all diseases, whether they are unseen by the human eye or not. They do exist, and these patients deserve the same help from scientists and health care providers.
Learning about healthcare leadership, it is these individuals who can create the transformational culture needed to adopt these changes. Administrators need to see the importance in these rare cases and not treat them any different than someone who has cancer. Financial aid is just as crucial in these circumstances, and public awareness needs to be done as well.
Going into this field, we plan to help patients in the best way possible, and sometimes that could just be believing their stories. Do not pass judgement just because you cannot see their pain, or detect a reason for the pain. Just listen and understand and promise to do the best you can to help.
I like that you aren't afraid to tackle this issue from a controversial standpoint. I attached an article from The Atlantic about just this thing. It's endemic. Additionally, many drug trails aren't done on women because of our hormone fluctuations and we essentially become guinea pigs because of this. You are right, we know our bodies and have to become advocates for our own care.
ReplyDeletehttps://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/
https://www.theguardian.com/lifeandstyle/2015/apr/30/fda-clinical-trials-gender-gap-epa-nih-institute-of-medicine-cardiovascular-disease
I have a friend who works in rare disease research. I've done some research on support groups for rare diseases. It's frightening to have something rare - it often gets misdiagnosed and mis-treated.
ReplyDelete