"I thought that looking presentable, having clean hair, and never letting myself cry until after I left the doctor’s office would get me better treatment. So I continued to smile through my numb face." -Ana Saldamando, "What It's Like When No One Believes You're Sick" As a molecular scientist, I like to deal in well-defined questions, quantitative data, evidence. I like to find answers. As the family member of someone with chronic health issues, there are usually no answers. I am happy just to have a medical professional take us seriously.
This semester I have been lucky enough to get a glimpse of the medical field from another perspective. As part of my Graduation Education in Medical Sciences program, I am shadowing Dr. Anne Louise Oaklander, a neurologist as Massachusetts General Hospital, as she see patients and runs a lab researching their disease. Dr. Oaklander studies Small Fiber Polyneuropathy (SFPN), a disease that causes pain and other symptoms because the small nerve fibers in the skin are damaged or dead. This disease is hard to diagnose and hard to treat. Dr. Oaklander is one of the foremost experts on this disease. Patients travel from all over to see her, usually as part of a long journey seeking relief, and for the past weeks I have been in the room while she see them. I have learned so much during this time, but one of the things that strikes me the most is the story I hear over and over again - the struggle to find a diagnosis. The struggle to make anyone believe they are sick at all. Doctors that have never heard of SFPN, doctors that don't believe it's real, doctors that send these patients home with no help after the third, fourth, fifth time they come in weeping with pain, assuming they are just seeking drugs. These patients are so relieved once their pain has a name and, now, a face in Dr. Oaklander. "I see so many doctors, but I only cry when I see you" said one young woman, "because you understand the disease." (She was a grad student before her condition forced her to drop out, my age.) Being in Dr. Oaklander's clinic can feel a little like emotional whiplash. In one appointment a patient told us they think about suicide every day of their life. In the next a patient told us that the latest treatment had completely changed their life, that they felt like a new person. SFPN, like many diseases, is very different for each individual patient, so there is no such thing as a one-size-fits-all cure. Humans have a tendency to push away anything they don't understand. When patients with an invisible disease come into their office and no lab test they can devise points to an answer, some well-meaning doctors decide there must not be a disease after all. They refer their patients to psychologists and move on. SFPN is just one of several real conditions that often get ignored. We have to educate our doctors better. That is one of Dr. Oaklander's missions - in many parts of her crazy schedule she is speaking at conferences, publishing papers, making connections like no one's business. But, increasingly, there is another angle of attack - educating the patients. Many of the patients that have come into the clinic have done reams of research on their condition. Some of them were the first to utter the term SFPN to their doctors, having found it on the internet. They come to Dr. Oaklander with questions on everything ranging from acupuncture to stem cell therapy. They carry binders with medication lists, dates of treatments, forum posts, scientific papers. They put me, the student ostensibly studying this disease, to shame. It's a revolution. It's invaluable. It's intimately familiar to me from my own experiences with my mom. But it's not enough. How many patients don't have the privilege of the time, resources, and education necessary to take control of their own health? Or just don't feel they have the authority to question their doctors? How many are falling through the cracks of our deeply broken healthcare system? And what can we do to fix it?
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AuthorAmanda Kedaigle's work in the Broad Institute focuses on leveraging brand new biological data modalities to study novel models of human brain development. Archives
February 2022
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