This Is Not Political…It’s Personal.

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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.

 

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As Real As It Gets…

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I have to just say this, while it’s fresh on my mind, right now, this moment…I have to admit that living with a disease like sarcoidosis is hard. What makes it hard isn’t the physical pain, although it’s unpleasant, but the fear of what this disease is going to do next. Not every day is hard, not every moment is scary, but just generally, it’s difficult and sometimes overwhelmingly so. Often, I can shove it into the recesses of my mind, to will it out of the way, so that I can live as normal a life as possible. I’ve learned to cope in ways I usually take for granted, like budgeting my time and energy where I need it most and like tuning out constant annoyingly unpredictable levels of pain. I have learned to forget what was once normal, what healthy was. I’ve adjusted to a new way of living. I won’t call it a “new normal.” I hate that expression. There is nothing normal about life with a disease like sarcoidosis. There is nothing normal about gulping for air or arguing with yourself to accomplish simple tasks like folding laundry or grocery shopping.

Despite my built in denial system, there are times in my life when this disease smacks me in the face and reminds me that it’s real, it’s part of me and it’s not going anywhere. Times when I get sick or injured and it takes me eight million times longer to heal than someone who doesn’t have a disease like sarcoidosis is one example. Another, is when I fall down from dizziness because my pulse oxygen level drops into the “danger zone.” I find myself reminded that this disease is a stubborn shadow lurking in my life when my husband looks at me with pitiful eyes after I’ve been coughing and wheezing for several minutes or when I am too weak to stand or climb stairs on my own.

As hard as I try to keep the fear of what this disease can and probably is doing to my body at bay, as hard as I work to combat this disease and the side effects of all the stupid medication I take to manage the symptoms of it, the fear patiently loiters, like a peeping tom it watches me and waits and, even though I can often quiet the fear, push it into the depths of my core, it never really goes away. The fear remains with me always, like the hum of a fluorescent light bulb. My fear is really just one more symptom of this disease, one more thing I have had to learn to manage.

Once and awhile though, something happens to kick that fear into high gear and it doesn’t even have to be something that happens to me. It can be something that happens to someone else in my small community of friends and fellow soldiers who wage their own private hellish war against this mean monster of a disease. I am experiencing one of those “once and while” moments now. I found out just a few days ago that a friend of mine with this lousy disease had a double lung transplant. This news is both exciting and terrifying. I am thrilled her moment has finally come to try to get a second chance at a better life, of course. And, this is something she must do if she wants a fighting chance at being around for any length of time for her family and loved ones.

I find myself feeling both hopeful and enormously anxious, terrified really. This is major surgery and that’s always scary but, couple it with a chance of organ rejection and it’s spine tingling. At the same time, if all goes well, she will be free of supplemental oxygen. She will be able to breath on her own and she will reap the rewards of what could truly be a more normal life. Whatever happens next, the journey will be long and the healing slow. I will hope for the very best for her because she deserves it. She is an inspiration to a lot of us with this disease and her legacy always will be.

My feelings about her journey are also selfishly personal. Whenever I hear a story like this, it is an acute reminder of the reality of how dangerous this disease is. No matter how I run from it, sarcoidosis is always one beat away for catching up with me. Stories like this remind me that sometimes, sarcoidosis could not only catch up to me but it could overtake me and leave me with limited options. There are times sarcoidosis has already left me blooded and bruised, beat up and worn out. There are times sarcoidosis has already forced me to make very difficult health and lifestyle decisions. Sometimes sarcoidosis refuses to live in the background and when this happens…sarcoidosis is as real as it gets.

The fact of the matter is that this disease is always as real as it gets, even while I attempt to squash it down, to accept the humiliation it forces upon me with some modicum of dignity and, even as I make necessary lifestyle changes to accommodate it, sarcoidosis never takes a break from its desire to reek havoc on body or in my life. It never stops it’s quest to send me into madness. Sarcoidosis seeks to do me harm and regardless of my best efforts to ignore it, sarcoidosis isn’t going anywhere. Sarcoidosis is a reality and it is woven into the fabric of the story of my life…and it always will be.

Five Years Later…

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Today marks an unusual and rather personal anniversary for me but, I’m choosing to share it because any time I can raise awareness about my disease, I feel obligated to do so. Five years ago today I underwent an open lung surgery to find out what was going on with my breathing and to determine once and for all if the images of my lungs were cancer or sarcoidosis or something else. I spent four nights in the hospital. My first and so far, (knocking on wood), only hospitalization for this disease. The diagnosis was sarcoidosis.

There are four stages for pulmonary sarcoidosis. I am stage four. Staging in pulmonary sarcoidosis is not like cancer staging, it does not necessarily predict prognosis. Staging in pulmonary sarcoidosis only determines what is seen by the physician in radiography. Stage four does mean that my lungs are scarred. I do have something called pulmonary fibrosis. I will be short of breath for the rest of my life because of it. I use inhalers to help me cope when my breathing is particularly difficult.

My life has changed a lot in five years. I could say that this disease has been the worst thing that has ever happened to me but it’s not. Even though this disease has changed my life in ways beyond measure and ways I would never have wanted or foreseen, it has also made me realize something fundamental about the importance of living in gratitude. I appreciate my life now in an almost primal way.

Having sarcoidosis has taught me the value of a simple life. I’ve let go of my need to strive and I am so much happier for it. Despite the physical hardships of my life with sarcoidosis, there is an easy joy to every day living for me now, that I did not have before I got sick and, it comes from a core understanding that control is an illusion. Once you lose your health, it puts all other things in new light.

Since my initial diagnosis, we have found the sarcoidosis in other organs and I have been on and off and on low doses of chemotherapy. There is no known cause and no known cure for sarcoidosis and treatment is really only used when the disease begins to impact quality of life or organ function. It has done both in my case.

So, I mark this anniversary with a bittersweet feeling. I hate this disease with a passion but I am equally passionate about what it has taught me about the value of living in peace and love and for the understanding that this very moment is the only one that truly matters.