I sit here knowing I need to write this but I also sit here at a loss for words. Why I am still shocked when invidious things are said about people with chronic illness amazes me. It happens so often that I should be used to it by now but I’m not. I guess a good place to start is by saying that while some people will only be able to read this blog post as political, it’s not and, if you are reading it that way then you are missing the point entirely. That being said, I am going to reference comments made during the current healthcare debate in America but I’m going to do so through the lens of a person who has a pre-existing condition. I am going to talk about these comments because the rhetoric is simply astounding. It’s extraordinary in how it exemplifies the very stereotypes most of us with chronic illness fight against every single day and it must be exposed for its inaccuracy and discriminatory nature.
To provide context to what I am referring to let me share some recent words from American politicians about pre-existing conditions and people who have them:
Representative, Mo Brooks, of Alabama said that people who “live good lives don’t have to worry about pre-existing conditions” and that people without pre-existing conditions have “done things right.” Senator Ron Johnson of Wisconsin recently compared pre-existing conditions to car crashes and basically blamed people with pre-existing conditions for being sick and for being the cause of a collapsing healthcare system in this country. North Carolina Representative, Robert Pittinger, has said that if you can’t afford healthcare because of your pre-existing condition, you should just move elsewhere. The Speaker of the House, Paul Ryan, has said that the healthy should not have to pay for the sick. The current Vice President, Mike Pence, has said that the healthcare system should, in part, be changed based on “personal responsibility”.
I share these thoughts from our government officials, not to scorn them for their politics and I honestly don’t care what party they belong to. I have no desire to debate the merits of Obamacare vs Trumpcare in this blog or anything else about the current state of healthcare in America. This blog is about shedding some serious light on the wedge that exists between the well and the chronically ill. When you take these comments and concepts on their face, outside the realm of politics, they speak volumes about the resentment the healthy feel for those of us with chronic conditions and sadly, this is nothing new for us. Those of us who have pre existing conditions and who suffer with chronic health issues have to navigate the complex world of living among well people’s judgements about our worth all the time.
Comments and concepts like these fall into a category all their own in the depth and breadth of the insensitive ignorance that many in the well world feel toward us. The lack of empathy in comments like these is profound, disturbing and quite frankly, morally reprehensible. To suggest that people with pre-existing conditions don’t live good lives is victim blaming and implies that anyone who is chronically ill deserves what they get because they brought it on themselves. Are there sometimes people who engage in unhealthy, high risk behavior that leads to poor health? Yes. Are there sometimes people who refuse to follow medical advice and are non-compliant with their medical care leading them to poor health? Yes. Is this the vast majority of people who live with a pre existing, chronic health condition? Not by a long shot.
I want to spend a little time on this particular concept…blaming the victim. Mr. Brooks didn’t say anything we aren’t already aware people feel about us but, the fact of the matter is, large numbers of us with chronic health issues didn’t do anything wrong at all. I happen to have sarcoidosis, a disease for which there is no known cause or cure, and it struck me down out of the blue forcing me to make lifestyle changes I loathed to make, like leaving a career that I loved. How can you seriously and with a straight face blame someone for contracting a disease for which there is no known cause? No one asks for or engages in behavior that will give them a disease like sarcoidosis or MS or lupus or epilepsy or muscular dystrophy or seizure disorders or narcolepsy….the list goes on.
Victim blaming is simply an easy out for many in the well community to put those of us with chronic health conditions on notice that we are getting what they think we deserve. This type of thinking actually bleeds right into the fabric of all the negative stereotypes about people with chronic illness, that we are lazy, that we don’t try hard enough, that we don’t belong, that we are just a suck on society, that we have little to offer and that we are not deserving of a good life because we brought disease upon ourselves. When you further examine comments that suggest we should just move elsewhere or we should take more “personal responsibility” or when we are compared to car accidents, then you really do begin to see the pattern of demoralizing prejudice that lurks in the minds of many of the well. Those of us with chronic health conditions, through no fault of our own, are unfairly and inaccurately seen as less worthy.
Stereotypes like these are not limited to the comments made by our political representatives. We come up against these types of attitudes every day. We should take better care of ourselves then we wouldn’t be sick is actually a very common theme among the well toward the chronically ill. We are often judged on the way we look. If we look good, then we can’t possibly be that sick. Conversely, if we are overweight or disheveled in some way, it’s assumed that we are lazy and have no self respect or self control. The well fail to calculate into their narrow minded judgement of us, that the medication we take for our illness can sometimes lead to weight management issues, massive fatigue and overwhelming feelings of malaise. Instead of taking the time to learn about our illnesses and what it’s like to live inside our bodies and deal with the hardships we face, the well make hurtful judgements about us based on what they see and not on what we actually experience.
It’s time for this level of vitriol toward the chronically ill and those with pre existing conditions to be exposed and for it to stop. It’s time for the well to show us some empathy and in case the well don’t know what empathy means, I’ll define it. Empathy is “the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner.” In other words, empathy is stopping long enough to put aside your judgement so that you demonstrate the ability to better understand and share in the feelings of someone walking a different path than you.
We don’t need the judgement of the well. We need the support of the well. We don’t need to be told what to do to take better care of ourselves, we already know. We simply need encouragement. We don’t want to be told to go elsewhere because we are a drain on the well. We want the well to see that we still have much to offer. We don’t want to be told that what is happening to us is of our own doing. We want the well to understand that we didn’t ask to be sick and that we don’t want to be sick. Our illnesses have robbed us of huge chunks of our lives. We don’t want the well to make assumptions that we don’t try hard enough. We try harder than the well will ever understand which is why we can’t win when we look too good to be sick…the judgement never ends.
I don’t spend much time caring what other people think of me anymore. I’ve gotten to the point in my life as a chronically ill person where I know that well people can’t truly understand my struggles, without experiencing them. I recognize that I was once ignorant too, before my sarcoidosis. That being said, I cannot in good conscience let publicly made comments by our political leaders go unchallenged because they have only said out loud what we already know, that the well judge us and do so harshly. While I may no longer care what other people think of me personally, I do care about my community. My community of people with pre existing conditions and chronic health issues don’t deserve to be treated as sub human, less than or unworthy and that’s why this is personal. When the well view us through that lens, then they don’t see WHO we are, they only see WHAT they think we are and they could not be more wrong.