At what point do we stand up, look around at the world that disgusts us with their discrimination and manners, and give up? At what point do we look at our checkbooks and see the enormous amounts of money that we spend each month just to facilitate the ease and comfort of people who long ago determined what and who we are, and simply close the book for the last time? At what time do we look at this disease that we are fighting each day, realizing that there are no medals, no winners, not even karma to back us up, and realize that it isn’t important.
How many times do we have to walk in a drugstore, with pharmacists that know us by sight, and be surprised about that new problem that has been created because we take so many drugs? How many times will there be problems because of the kind of drugs someone in some office categorized long, long time ago? How many times do we have to fight the costs, the quantity, and the administrative assistants in our doctor’s offices who can’t seem to fax a single form to the drugstore that would solve all the problems? How many times do we have to spend our time on the phone trying to figure out why our doctor’s offices simply can’t communicate like they are in the twenty-first century? At what point do we simply say it ain’t worth the time?
How many times are we given samples of drugs that end up really helping only to find out that a course, or thirty days worth of the drug, will cost close to $1,000.00 a month. And your doctor likes to prescribe 90 days. How many times will we fill out the paperwork at some drug manufactures only to learn that for some reason only the bean counter in the corner office knows we are not eligible for help with the payment. How many times do we find a good drug only to be denied the very thing that is helping us? How many times do we listen to people who fear the very person we are and yet we can’t simply explain to them that if we could get help, we would probably try it? At what point do we simply say this ain’t worth it?
How many times do we have to look at our bosses and explain that we have another appointment, but we can’t describe the disease, before we lose our job? And how many times are we told the ADA will protect us, only to realize in our case it isn’t applicable? How many doctors are we going to have to go to only to be denied a living? At what point do we start to laugh and walk away?
How many times are we going to spend time and money searching for the right set of doctors only to have or insurance change? And those of us who suffer are required to go to multiple doctors. How many times are we going to have to go visit with doctors who not only don’t care, actually don’t make an effort to change our perceptions and simply sit there asking questions that have nothing to do with what we are talking about? How many times do we do our research on these doctors, find those who know the best doctors, visit the doctors, only to be seen for exactly five weeks before our insurance changes? At what point do we look around and realize that maybe those doctors visits aren’t worth it.
How many times are we going to be treated as monsters by people who not only don’t have our diseases but don’t actually know anyone who does? How many times are we going to keep quiet rather than defend ourselves because we know the consequences of being bold; the possible arrests, the pity from our loves ones, or worse the dismissal because we are daring to show our humanity? How many times are we going to lower our head in shame because we can’t be ourselves, we can’t be who and what we are made of, we can’t speak our words because we are so much less in the minds of others? At what point do we start speaking the words that destroy the insides of our soul every time we suppress them?
How many times do we deal with the weight gain, the acne, the lack of sex drive that literally crumbles our marriages, or maybe the rotting of our own teeth out of our mouth? How many times does the doctors tell us to simply live with the side effects, they will get better? How many times do we physically get sick to mentally get well? At what point do we get to say enough, the drugs are for society’s comfort not mine?
At what point do we get to show the world that the fight we live with each day is not worth the slaughter of our own strength? At what point do we finally realize that this world cannot understand our disease or who we are underneath all the layers of protection and say I am done? At what point do we get to look at this disease and realize that we don’t have a disease, except in the minds of those who made it all up? At what point to we get to stand up as adults and say the person I am may at times be difficult, may at times be sad or irrationally happy, but I am ok? At what point do we say yes we are human, we are not a disease no matter how we are treated, stand up and simply walk away?