CF is one of the invisible diseases. There are good aspects of this. People don’t automatically know I’m sick. I can tell them on my own time and in my own way. They don’t give me their piteous looks or their awkward responses when they don’t know what to say. I’m sure there are others; these are just the first examples that come to mind. Either way, it’s irrelevant, because the main purpose of this post is to discuss the other side of the coin.
There are also bad aspects of this. People see me coughing abundantly and assume I’m spreading some lethal airborne disease. I understand the concern, and I even understand people trying to keep a clear distance from me. What are completely unnecessary are the dirty looks. First of all, I am not coughing onto you. I am coughing into my elbow, more often than not. Second of all, even if I were coughing on you, unless you are a severely immunocompromised person (or someone else with CF), chances are there is no way for me to get you sick. I have bad lungs. They do colonize with bacteria that will eventually kill me. But this bacteria is on and around every person at all times (chances are very likely it lives in your showers, bathtubs, sinks, toilets, and bathrooms as a whole – it loves wet places). Healthy lungs are just in the condition to remove it properly like the lung cilia is meant to. Because CF lungs are thick and sticky and wet, this bacteria that doesn’t affect most people, sets up camp and ultimately destroys our lungs. For the record, the bug that is common and causes problems for CFers that I refer to is called pseudomonas aeruginosa. There are a slew of other bacteria that cause us problems, but that’s the main and most frequent culprit.
So if someone moves out of my way in public, it kind of hurts my feelings, but I definitely understand. Most people you meet in public that have a cough that sounds anything like mine are probably contagious with something. But even for those people, do you think they’re coughing to interrupt you? They’re coughing just to get under your skin and annoy you? If they’re anything like me, they get severely embarrassed in public, especially when a cough just won’t let up. They know everyone is staring and judging them. “Well why don’t they wait until they’re not sick to go out?!” There is some validity to this question for people with highly contagious reasons for their coughs (but even then, people have to work, they have to get groceries and pick up their kids, just like you). On the other hand, if I (or any of my other CFers) waited until our cough “went away” to go out and do ANYTHING in public, we’d never leave the house. Ever. I once went to the movies and one of the pre-show “courtesy” rules was “Please no coughing, it’s disruptive.” My jaw almost hit the floor. Most of the time when people cough, it’s not something they’re doing to be obnoxious. It’s something they have no choice on. I always had a lot of trouble during classes, movies, or at the library (basically anywhere you’re not supposed to be making abundant noise). I am constantly concerned I am being disruptive. I’m sure I am, at least sometimes. But there’s nothing I can do about it. As much as I don’t like being disruptive to people, if I never went anywhere for fear of my cough bothering others, again, I’d never leave the house. Ever.
I am always happy to educate anyone who will ask a question or give me a concerned look rather than a rude expression. I am more than happy to quell anyone’s fears. I understand why you’re concerned that I might be contagious. Let me assure you I am not, I can tell you precisely what I have and therefore why it’s not contagious.
Let’s go with the second main reason why CF being invisible is a negative. People look at me and I look almost perfectly fine most of the time. Somewhat thinner than might be ideal, perhaps a little more tired-looking. If I’m wearing something where my port is visible, that tends to give a small hint. But that’s pretty much it. Thus opens up people assuming they know me and judging me for it. Let’s start with a handicapped parking pass. I only really use it when I feel I need it. When it’s stiflingly hot, or extra bitter cold, or I’m particularly sick. It embarrasses me to use it. I’ve had people in the car with me say “Oh come on, use your sticker!” If I don’t feel I need it on any given day, I do not use it. End of story. It has gotten most often used on various college campuses. When I went to CCSU, I often used it. It was either park all the way across the campus and walk (often right behind some smokers, I might add), or use the handicapped pass and park right next to whatever building my classes were in. I got stopped for this twice. Once by a self-righteous teacher who I didn’t know personally. She stopped me as I got out of my car to say, “That’s a handicapped spot, you know!” I replied as patiently as possible, “Yes I know, I have a sticker.” I got more attitude back, “You should really leave that for someone who actually needs it.” That’s when I lost my patience, “Listen lady, the sticker is mine. I am disabled. I have a lung disease.” Then I went to my class. The second time was slightly nicer (and more understandable, as it was an actual law enforcement staff member), but still embarrassing. A campus cop stopped me as I was parking, “You know that’s a handicapped spot?” I sighed, “Yes I know. This sticker is mine.” He then asked if he could check the number and find out to whom it was registered. I told him to go right ahead. I never heard from him again. Clearly, I passed. These two instances (though more so the first one with the teacher) caused me to stop using my sticker. I have it legally. It is mine and it is registered to me. I should be able to use it without being in constant fear of people being sanctimonious know-it-all pricks. There have been a lot of photos going around the internet lately. People leaving notes on cars that the driver should save the handicapped spot for someone who’s “REALLY handicapped”. I give everyone the benefit of the doubt, as long as they have a sticker or a plate. The only time I would consider speaking up is when I see no proof they can legally park there. And even then, they’d probably get “Did you forget to put up your sticker?” from me before I’d be a judgmental ass and say rude things.
People also tend to believe I’m making excuses or exaggerating. If I cancel plans for health reasons, they are legitimate reasons. Again, not something I particularly relish doing, and not something I ever do for amusement. People in the grocery store see I’m using a food stamps card and look me up and down while thinking “Well why the hell should she get food stamps? She looks fine. She should get a job.” I know not everyone thinks this way, but an unfortunate number of people do. More often than not, things are not what they seem to you. Yes, I have an iPhone and I’m on food stamps. The iPhone was the first phone I had bought in seven years. It was the first new phone I had bought in over a decade. I also only purchased it after my previous phone completely died. And lastly, that phone was purchased with a small portion of the life insurance money we got after my father died from early-onset Parkinson’s disease and related dementia. So yes, I have a nice phone. I can still promise you, I cannot work a normal job, I need my benefits (especially my medical insurance), and the government has deemed me acceptable to receive the aid I do. Last I checked, the government was kind of a collective tight-ass with its money. If they can get out of paying for something for people, they will. It is the government (after years of looking over every thing I own and any possible assets I may have ever had) that deemed me eligible for SSI, food stamps, heat assistance, state Medicaid, and the energy efficiency audit/improvements. If they could get out of giving me aid, I’m sure they would. They tried a handful of times in several arenas for many years.
Just because someone looks fine doesn’t mean they are. You know how much you rely on your internal organs? Well, that’s what severely damaged and sick in me. So, obviously you can’t see it, short of cutting me open and digging around. Yes I can walk and stand and sit. But all the disability laws include a clause that states something like “Any disability that severely impairs any basic activity of living is eligible.” Pretty sure breathing counts as a basic activity of living. No, my disability is not as simple or succinct as “I can’t breathe properly.” See visual aid below.
It includes all the organs and systems in my body that are effected and do not function as they should. It includes all the hours I spend in a day just to make sure I can continue to exist. Doing my meds, my therapies, cleaning medical equipment, making sure I actually cook and eat, and going to various doctor’s appointments, among other things. It takes into account my lungs, my digestion, how often I go on IVs, how often I go into the hospital, and how my schedule is totally unpredictable. Try getting (and then keeping) a job when a few times a year you have to call your boss and say “I had a doctor’s appointment this morning and he has decided to keep me in the hospital. I will probably be out for a week.” Yes, I know firing someone for his/her disability violates the American with Disabilities Act of 1990. It is often difficult to prove that one is being fired specifically for their disability. It’s quite easy for employers to make up “real reasons” before or after they fire a disabled person.
I am very aware that I am not the common example. It is fair to assume people in public that are coughing are contagious. So avoid me if you must. Ask a question if you like. But don’t be rude and just glare at me like my existence is a huge inconvenience to you. You think I like coughing like this all the time? It’s no picnic for me either. I know it’s easy to see someone who seems to walk fine and think “Well what the hell do they need a handicapped parking sticker for?” If someone has the proper identification on their vehicle, give them the benefit of the doubt. There’s often a lot going on that you don’t necessarily see. And no, you do not know everything.
Finally, I posted this to facebook a few weeks ago. It’s a lengthy read, but well worth it. It addresses the widespread judgment of people getting government aid and how most of the time, things aren’t what they seem.