For an audio version go to: https://youtu.be/9tx3CihvP90
In 1989, The Golden Girls kicked off their fifth season with a two-part episode about Dorothy (Bea Arthur) trying to get a medical professional to take her mysterious fatigue and physical symptoms seriously. The story was based on the real life struggles of Golden Girls staff writer Susan Harris. The episodes, titled “Sick and Tired”, are sadly reflective of what people with chronic pain and fatigue still experience today. Twenty-six years later, the lines are still being repeated by patients trying to be taken seriously by doctors who dismiss them. All this time later and yet people who know their bodies intimately, and know when something is wrong, continue to be told by doctors that they are just tired, that they need a change in their life, that nothing is wrong with them (despite evidence to the contrary) and that if something is wrong it must be mental.
As a person who lives with chronic pain and episodic fatigue I watched in amazement as interactions I’ve had with doctors were played out on a show from twenty-six years ago. I watched as lines I’d been fed by impatient doctors were spoken to Dorothy’s character: “you are not sick”, “it is mental”, “there’s nothing wrong with you”, “have you seen a psychiatrist?”. Why, I thought, has the medical profession not come further in their treatment of people with chronic pain? Our symptoms might not fit neatly into a doctor’s checklist, but our pain, fatigue and experiences are real and deserve to be investigated. Why do patients still have to fight so hard to be heard, to have their knowledge of their bodies respected, and to not be treated like people who are wasting doctors’ time?
How many times have people with chronic pain or fatigue said to themselves, as Dorothy says in the episode “maybe I am crazy, nobody believes me, maybe I am crazy”. Fortunately Dorothy has friends who tell her “Just because a doctor hasn’t found something doesn’t mean it isn’t there.” When Dorothy finally finds a doctor who believes her she says, as so many of us have said “I can’t tell you what it means to have someone like you believe in me.” Upon seeing a new specialist who confirms Chronic Fatigue Syndrome, Dorothy asks why the other doctors didn’t say the same, his response is that “the ones who have heard about sometimes have trouble believing it exists because they can’t see it under their microscopes just yet. Those colleagues of mine tend to blame the victim.” Oh, how I wish I hadn’t completely understood that line. I have, too many times to count, been blamed by medical professionals as the problem, as has the majority of people with chronic fatigue or pain. This goes back to my last column, in which I state that the medical profession must make room for doctors to be vulnerable, to not know all the answers, to say to a patient that they just don’t know what is happening or what to do; instead, frustrated by their inability to diagnosis something, they blame the patient.
In the episode Dorothy celebrates with a dinner out with her friends and states “I can’t tell you how relieved I am to be sick, and not sick and crazy. And to know that thousands of others have it too.” What a relief it is to have a name, to know one isn’t crazy, to know others understand and live your experience, to know that fighting for yourself and your health was worth it. This line still resonates today with anyone who has chronic pain or fatigue.
Dorothy, unlike so many of us, has an opportunity to confront one of the specialists that so rudely dismissed her and her symptoms. She gets to say what so many of us wish we had the chance to say “I came to you sick and scared and you dismissed me. You didn’t have the answer and instead of saying I don’t know, you dismissed me. You made me feel like a fool, a neurotic, a waste of your time. No one deserves that kind of treatment. They need to be heard. They need caring. They need compassion.”
I hope that in twenty-six years, someone with chronic pain or fatigue, watching these two episodes, won’t feel the same sense of recognition as I did. I hope that patients continue to speak out in forums, on blogs, in conferences, wherever we can, to ensure that the medical professionals understand that dismissing us, ignoring our symptoms, and making us feel crazy needs to stop! The medical professionals don’t need to have all the answers, although that would be nice, but they do need to have a basic level of respect for patients, their experiences, and their pain and/or fatigue. We need to work together to find answers. And hopefully one day the two part episode “Sick and Tired” will be a relic of long forgotten days.