Norms in the Medical Community
There exist in our social relationships many norms, or expectations: it is expected that we all fit in either category as male or female, certain prescribed races, only cis-gendered, and then society expects us to behave in certain ways based on those prescribed categories.
These are called norms. Almost every headline that appears in the news these days has something to do with norms: someone rebelling against the norm, someone fighting for the rights of persons who do not “fit” a prescribed norm. On and on.
I’ve come to the realization that there exist norms within the medical community as well. It says something about us, that we need chaplains in hospitals to assist patients at their final moments of life, and to assist their families in finding peace in those final, unexpected, often tragic end moments.
I have been an unwilling participant in the medical community for some 20+ years now. A chronic patient, with a chronic illness that has brought all sorts of “expected behaviors” and a long list of people I have disappointed because my disease did not fit within their expectation of what my disease should be.
Even though my body has stopped working the same way that a “normal person’s” body works, I am still constantly compared to a “normal person.” Let’s get my body to behave like a normal person’s body because that is the ideal. But my body will never perform like the “norm,” because it is not “the norm.”
Every doctor’s appointment and every test result is a grim reminder of just how much my body has failed to meet “the norm.” There is nothing normal about my life, nothing normal about how I go about my daily work, chores, routines, and social life. Sometimes my behaviors actually might appear quite odd just in the attempt to appear normal.
Doctors and health professionals have tried to tell me what my “norm” should look like. They have forced their visions of how my life will look upon me. Those visions didn’t include having children. Those visions often are disastrous and terrifying. Words like “complications” and “long-term effects” are tossed around like candy, but not sweet M&M’s candy. Oh no, this candy is bitter and painful, and carries a threat. Do as we expect you to, or else this is what will happen to you.
Society, meaning friends and family, also have their own codified “norm” that they are quick to force upon the newly diagnosed member of the medical community. It sounds like, “Oh, I didn’t know you could do that.” As if they knew anything at all. Sometimes it sounds like, “Well, if you would only do such and such, then this would go away.” As if I had somehow failed in meeting this “norm” and that had become my downfall.
I’m refusing to name my own condition, because somehow I suspect that anyone who deals with chronic, long-term conditions can identify with everything that has been written. I grieve most when we post “inspirational videos” that show a person with a very obvious disability making a remarkable achievement. Personal achievements are amazing things and should be celebrated, yes, but never compared. And those videos never seem to show the tears and personal pain and suffering that person went through to achieve that. And honestly, for anyone with a disability or chronic health condition, celebrating the mundane is the thing we can all do to validate and acknowledge that person. Rather than expecting miracles from people who face challenges just getting out of bed today. Stop expecting miracles.
Sometimes the most terrific barriers to human existence in the face of disability is the most silent one: the emotional and spiritual and psychological tolls that each patient faces. The medical community is remiss on this, I’m afraid, when we force patients to go to separate doctors for each body part, and forget that the mind and emotions are connected to each of those parts. When a diagnosis is made, the emotional toll is immediate and never ends. The struggles the patient faces aren’t just the struggles on the outside, but immediately the ones on the inside.
A diagnosis means an instant shattering of “the norm.” Life is no longer normal. The medical community tries to tell you what to expect, what life will be like. But their knowledge, unless they are patients themselves, is limited to textbook knowledge, not actual living experience. It doesn’t take patients long to figure out that their mileage can and will vary. It doesn’t take long before the patient realizes that the old norm is shattered, and there is no new norm. Sometimes that norm looks like outright rebellion. AMA, or against medical advice, they call it.
And then we toss an additional harness onto them: the one called mental illness. We seriously expect people to walk into the doctor’s office and receive the most devastating and life-changing words they will ever hear, and then leave the doctor praising the Lord because they are blessed? Blessed because now the medical community wishes to place them in a treatment program with 24-hour monitoring? Blessed because the intervention worked to shame the patient into cooperating with treatment that is abusing them? Blessed because they will die?
Friends and family quickly jump in with their own opinions and control issues and misinformation. Just like people like to tell pregnant women their labor horror stories, people like to tell persons with disabilities their horror stories. Try to tell them how to live, or how to deal with their condition. They are quick to judge. Quick to dismiss, “Well, at least you don’t have this……”
Reality with a chronic condition is not the reality of a “normal functioning” human. Reality is sleepless nights and rounds of blood work, physical limitations that didn’t exist before. Exhaustion. Side effects. Lack of understanding. A different norm that you know you will never be able to live up to. A feeling of failure, because your body failed you. Exhaustion. Every difficulty a judgment. Did I mention exhaustion?
This is how we as a society have saddled our disabled, our chronically ill, our persons who happen to not “fit in a norm,” with our own selfish ideas of what the world should be.
This is written to all who have had to listen to the judgments of those who did not understand, and who cried the tears of alienation simply because they were different.