Cases of Injustices, Humiliations, and Sorrows
I’m a positive guy, I swear it. But I’m exhausted and need a good vent.
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When I pay about $100 per week for prescription medicine, I feel punished for having a genetic defect. I loathe that my body actively tries to murder itself against the begging of my brain, and that society’s response is to cut me with scrolled receipts. Kick me while I’m down. I’m frightened at the thought that I leave my parents’ health insurance when I turn 26 this June. What will I do when there are healthcare businessmen like Nostrum Pharmaceuticals President Nirmal Mulye, who recently said, “I think it is a moral requirement to make money when you can,” to justify his company’s 400 percent price hike on an essential medication?
By the way, people die because they can’t afford transplants; because they’re not popular enough to have social media reach for crowdfunding and they’re too sick to organize fundraisers.
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When a doctor says they want to do tests on me because “it would be interesting,” I feel like a lab rat. I am a person. I have a story. I pursue a high quality of life. I didn’t volunteer for this disease. I don’t want it. I have the right to turn down being the subject of research. And I have the right to ask for the least painful options for treatment. I’m seen as a chronically ill patient and I see me as a dude who doesn’t want to get unnecessarily hurt for the sake of others’ convenience.
By the way, I get that student doctors are necessary, but I’ve fought relentlessly for my donor’s lungs and I’ll never stop defending them, so please don’t be bitter when I ask that only a veteran doctor do my bronchoscopy.
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When that stranger screamed at me on the airplane to stop coughing, even after I clarified I have a noncontagious lung disease, I wished ableism was advocated against as much as other prejudices. Those eight years ago, as a 17-year-old, no one on the plane stood up for me as I was loudly humiliated for my mutation by a full-grown man, then forced to sit beside him for five hours. In the years before and since, I’ve lost job opportunities, hobbies, friendships, school grades, and dignity because people couldn’t handle my deafness and chronic illness. And yes, I’m still paranoid on airplanes.
By the way, even “woke” people who (rightfully) stand for the rights of most other oppressed groups constantly say and do ableist things without realizing it. This is why we need awareness.
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When my friends are yelled at for parking in accessible spaces despite having end-stage CF, I wish people would put aside their vigilante “justice” and instead put that much effort into raising awareness of rare diseases or funding transplants and treatments. No one owes you an explanation of why they need accommodations. We feel ashamed to be sick and even your “polite asking” of why an accessible space is needed … that shames us, even if we have a legitimate reason.
By the way, invisible illnesses are real, and if you don’t know that basic medical fact, then you probably have no business in policing “for” chronic illness and disabilities communities.
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When my friends in the CF community die, a few each month, I wish I didn’t feel desensitized by death. I wish that, at 25 years old, I didn’t have more dead friends than many elderly people do. I wish I didn’t hear about deaths and move on hours later because pausing my life to grieve these many deaths would mean an eternity of mourning. And I gotta live fast now. ‘Cause I might be next.
By the way, this disease is far crueler than any human could be.
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I’m a positive guy, I swear it. I was exhausted and needed a good vent.
It might take a while to get to sleep.
Follow me on Instagram or on my Facebook page, where I don’t rant much.
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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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Comments
Nicole Lyster
I good rant is good for you, and its good for us too. I want to be reminded that the NHS in the UK is what keeps my children alive, and that when (if) they reach 26 they will still be allowed to use it without payment, unless our ignorant and greedy politicians destroy it in the pursuit of profit. So you rant, loudly.
DI
I am grateful that you made these comments. I, also, as many others have suffered as you have with questions about my coughing, and many other oddities this disease can cause in a person's behavior. I get terrified when the weather turns rainy as the high humidity makes the endless hacking of green chunks of mucous worse. The endless questions about why I am so tired after a brief walk. The doctors, who are mostly idiots, I say all the time, because they treat patients like S&!T instead of human beings worthy of dignity and respect. I want to give you some encouragement. Though I feel half dead many days, I am trying to make it through school to one day help to find cures for this disease and the symptoms it causes. It is at the top of my list to find more healthy ways to lessen symptoms without the expensive medications. And by the way what kind of evil person really thinks that making money off sick and poor people is a "moral" thing? My God, what a messed up world we live in. I hope somebody knocks some sense into that man and teaches our children better what true "business" really means, i.e. not just making money.
Holly Armstrong
I have a 42 year old son with CF. Your posts resonate with us big time. I would so love to speak to you over the phone. Any chance of that happening?
Stacy
Let us pray that the many years it takes to develop and have approval of new CF and CF related drugs will be on the market to help all of us with CF.. even we who have not been diagnosed until their 50's 60's and 70's...
who have suffered more indignant comments and failures of doctors than you at your 25 yrs. For many of us, how much we would have benefited to have had access to drugs to ease the many illnesses we have suffered.
The great investment of many peoples time and money to find new drugs to help prolong our lives does not equate to political greed... oft times that money is re-invested into more scientific discoveries.
I understand completely your venting... I too often see my "new" world painted black, then I end my despair with the knowledge that so many others are with me in this CF world and so many who are working to help find new drugs to subdue it.
Kathy Geiger
I get it we all need a place to vent and be heard ,i am so sorry this has happened to you and I can only hope we can teach each other through are life time with CF .I am a adult with CF and I try and do what i can to get answers through research and hope it will help others that are brought into this world to find new drugs that will give others a fighting chance It is something that helps me give back to others ,I am grateful we all can speak what we feel as we deal with so much one day at a time I wish you well and the best of health .
Rick Steingruby
Dear Brad, I believe you are a positive guy and I appreciate the fine rant that you shared. Your story of being humiliated by the idiot, on the plane, made me sad. Had I been present, I would have had stood up for you. I have two children suffering with CF and I know they can relate to many of your feelings. Stay strong and keep fighting!