When you’re ill, and you reach the threshold of what you consider ‘enough pain to warrant treatment,’ you can do a number of things: you can continue to live with the pain, you can try at-home remedies, you can seek out holistic forms of treatment that exist outside the medical realm, or you can go to the doctor.
Pain is a matter of perception. Most adults know when we’re in enough pain to seek treatment. Adults are seen as having certain rights to their bodies, to experience the world in their own way, and to deal with the scrapes and bruises life has dealt them as they find appropriate, and to make decisions regarding their bodies. This is a bit of a fantasy on the part of American society, however; it is well known and accounted for that women have not always been seen as full citizens in the United States, within and outside of the healthcare sector.
Women’s bodies have not been accorded autonomy in the way that men’s bodies have been accorded autonomy, in both the public and private sector. Women’s bodies, queer bodies, (dis)abled bodies, African American bodies, and Native American bodies have been raped, molested, denied autonomy, controlled, exploited, and treated as objects for white male patriarchal profit and gain across time. The painful reality is that these heinous and objectifying American “traditions” on which our county, and its medical industry, were built continue to plague us as a society, preventing us from radical and collective healing.
But daily bumps and aches, cancers and sciatic pains, plague us all, and so we must try to grapple with what it means to live in a world in which illness is as American, as human, and as common, as apple pie, as petty theft, as breath.
Whether it’s your ankle that hurts, your knee that’s sore, your tooth that aches, your heart that hurts, or something else: you decide when it is time to seek the advice of a professional, and sometimes (if your homeland offers universalized health care or if you are a member of an elite) you can choose the professional who will assess your condition. You might be prodded by a nagging neighbor or urged to seek help from friends and family, if you are stubborn; but you, ultimately, have the right to decide whether or not, and when, you need treatment. Doctors don’t police the street looking for potential patients, for red elbows or pink eyes or hangnails, in need of treatment.
In general, it is not common for members of American society in this day and age to fear physicians because when it comes to generalized medical care, patients are seen as having the right: to seek, to not seek, to pursue, or to deny treatment. Most Americans do not have to worry that when they go to see a physician, some terrible tragedy will unfold. They don’t have to worry that they will go to see a physician and not be allowed out of the office.
Most Americans don’t have to worry that their doctor is going to harm them: to stab them in the heart when they come in for heart failure or to kick them in the knee when they come in for a bad knee or to make them more sick than when they came in seeking help. Most Americans don’t have to worry about how others are going to treat them because they had to go to the hospital for diverticulitis or because the flu knocked them out for two weeks. Most Americans don’t have to worry that their pancreatitis is going to cause the police to drive down their street, checking up on their pancreas.
Most Americans don’t have to worry that their doctor might harness them to a bed if they go in seeking treatment for their ulcers. If most Americans had to fear that their illness would result in their loss of rights, in the ripping away of their autonomy; most Americans would NOT seek treatment– they would not go to the doctor, they would try to hide whatever aches and pains they might experience. Or they might revolt because they would know that such imperialist treatment is wrong.
No one can force an adult to go through chemotherapy if that adult chooses not to do so. No one can force an adult to have her broken ankle wrapped if she prefers to let it heal at home. These examples involve physical ailments– ones recognized and recognizable.
If a heart doctor is treating a fellow with a heart condition, and she says, “Your heart condition is serious. You could die from this. I recommend emergency surgery.” Presumably, the fellow with the heart condition can respond in a number of ways, by saying, “Thank you but I prefer to go home and continue to eat my fruits and vegetables,” or by saying, “I need some time to talk to my kids and think about this,” or, “Yes, I will follow your advice; hook me up, and let’s do this!”
When you are unwell, and you perceive yourself as being ill, you know one thing: you know you have, or should have, the right to choose.
But what happens when you are well.
What happens when you’re well but others believe you are ill.
What happens when someone is well, when someone feels fine, and is going about their business being fine and treating others well.
What happens when an individual is well and meets up with a group that has the power to call this wellness into question.
What happens when:
A bunch of others point at the individual, saying, “Hold up; we think you’re sick.”
The well individual, in shock and confusion says, “I don’t feel sick.”
The group says, “Well, you seem sick to us. We think you are.”
The well individual says, “I’m well. I’m not sick.”
The group says, “You’re ill.”
The well individual says, “Come on now, piss off; if I don’t feel ill, I’m not ill. Where is the illness? Where is it? If you can prove to me that I am ill, when I feel absolutely fine, then maybe I’ll be convinced.”
The group says, “We can’t prove it– we can only agree upon it. Consensus is our proof. We all think so, so it must be true.”
The well individual says, “Show it to me. Show me the illness. I cannot see it, I do not feel it, where is it?”
The group says, “We cannot show it to you; it’s invisible, but we know it’s there.”
The well individual says, “What do you mean you can’t show me? You can’t see it? It’s invisible! That sounds nuts. That sounds delusional!”
The group says, “No, it is you who are delusional. You cannot see what we see: that you are ill. Therefore, you must be ill.”
The well individual says, “Tell me where it is? Where is the injury, the illness, in me that you see that I cannot see.”
The group says, “It’s inside. We can’t show you. It’s not visible. But we all agree something is ill about you, and since we cannot find physical evidence of this, we’ve come up with a list of things that are not physical but that demonstrate that you are ill.”
The well individual says, “What things? Show me those.”
The groups says, “Sorry bloke, we can’t show you, so we made up names, and these names are names that describe you. And we’ll use these names so we can stop you from being ill.”
The well individual says, “But I don’t feel ill; I feel well. I am well.”
The group says, “The fact that you feel well, because it is not how we see you– that is the greatest sign of all that you are ill.”
The well individual says, “This makes very little sense.”
The group says, “It does not have to make sense.”
The well individual says, “Why are you even paying attention to me? Why can’t I go about my day and you go about yours?”
The group says, “We’ve gotten ourselves worked up about you, that’s why. We think you are ill. And it is not okay to be ill.”
The well individual says, “Why is my perspective about my own body less important than yours? I have said I feel well but what I say does not seem to matter. Why do your opinions count more than mine– about my own body?!”
The group says, “Because there are more of us than you. And because we have power, money, and authority, and you do not.”
The well individual says, “Why is it important to you to even pay attention to me? Why can’t I just go about my day? I feel fine, I feel well, I feel swell.”
The group says, “Because you scare us. You make us feel afraid.”
The well individual says, “I scare you? Why? You’re afraid? Of what?”
The group says, “Of what might happen!”
The well individual says, “Of what might happen? That could be anything! What have I done to make you fear what might happen?”
The groups says, “Nothing yet, but we’re been thinking and talking about you, and we have decided that you are very different than us. So you must be ill. And illness scares us so we are scared of you.”
The well individual says, “So what about it? I’ve done nothing to frighten anyone. I can’t help that you’re scared. Maybe you need help. Anyway, call me what you will. Call me ill if that pleases you. I’m well, and I’ll not agree with you. Now bugger off.”
The group says, “It is not your choice anymore. There are more of us than you. We have decided that you are ill and so we will also decide what to do about you now that we have decided that you are ill.”
The well individual says, “Oh, Criminy. I was feeling well, but now I’m really starting to feel, well, ill.”
The above dialogue is fictional and is intended to raise issues related to patient autonomy.
There is a difference between someone going to the doctor because they feel sick– and a group of people deciding that someone else is sick and needs care. Who gets to say who is sick and injured? Who gets to decide if someone is ill, or well, and what treatment, if any, is best? The patient? The doctor? Schmucks on the street?
Patient rights matter because human rights matter. Because patients are human beings.
While most Americans recognize the need for patient rights when it comes to the treatment of physical conditions, unfortunately there is a gap when it comes to the way in which Americans recognize the patient rights of those with cognitive differences, particularly those with what are called “psychological conditions” and “mental illnesses.”
On Being Ill, by Virginia Woolf, was first published in 1930 by The Hogarth Press. Hermione Lee wrote of the essay that it brings to the surface the “transformational effects of illness in a world that often pushes the universal experience deep into the shadows.”
Woolf begins the essay with this line:
“Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise of temperature reveals, what ancient and obdurate oaks are uprooted in us by the act of sickness, how we go down into the pit of death and feel the waters of annihilation close above our heads and wake thinking to find ourselves in the presence of the angels and the harpers when we have a tooth out and come to the surface in the dentist’s arm-chair and confuse his “Rise the mouth–rinse the mouth” with the greeting of the Deity stooping from the floor of Heaven to welcome us– when we think of this, as we are so frequently force to think of it, it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.”
Here, Woolf addresses the absurdity of not thinking of illness as an entity as central and fascinating to the human experience as love. She also, through painting illness as a path into art, reverses our expectations about the nature of illness, and her prose suggests that in illness there is a kind of wellness– a wellness of spirit that brings the one who is ill into a state of perception about the human experience that is deeper and more beautiful than can be experienced in wellness. Woolf’s profound sentiment is that one kind of illness can give birth to another kind of wellness, a wellness derived from illness, a wellness through the consciousness altered into observation by illness. She collapses the binary of wellness/illness by making one compact within the other, able to coexist with the other, able to be born of the other. “On being ill,” then, is also on being well, well through all that the lens of being “ill” has taught us to see: all in life that one who has not been well-and-ill in this way is unable to perceive.
Woolf wrote this as someone who struggled with illness, with being different, at a time when women were considered ill for defying notions of traditional womanhood or for being disobedient to their husbands. Woolf wrote this at a time when patient rights were non-existent– when the will of the husband over the wife, the doctor over the patient, superseded anything she might have done, said, or written.
And what did she do from her room, from her desk, from her chair, from her bed:
She gave us wellness.
She created wellness from illness.
Her words instruct us how to be well in a world that might be ill, in a world that might make us ill.
Essay by Jessica Lake Mason, Co-founder, Madwomen in the Attic