The Realities of Being Chronically Ill - A Pissed Off Rant In A Toilet Paper Obsessed World
10% of Americans live with a chronic illness. Being rare in America is becoming increasingly common. With the aging population and pregnant women, it's our duty as a society to protect the most vulnerable. It shouldn't end after COVID-19 is over. We don't need to live with the extreme measures some of us currently are; however, we need to protect those around us and become more understanding as a society. Chances are, someone you love is effected.
There are things that I don't want to think about. I don't want to remember the last thirty-seven years of misdiagnoses, overtreatment, under treatment, and hospitalizations (affectionately known as incarcerations). I don't want to think about the medical mistakes, mishaps, negligence, and pure lack of respect for human life that I've endured, encountered, and witnessed firsthand at my expense. I don't want to think about the countless administrators that I've spoken to at hospitals whose apologies always come too little, too late and usually fall upon deaf ears because they're only afraid of litigation. I'm not sure I've recieved more than one legitimate apology from a medical professional in almost forty years. The statute of limitations had already expired at that point and my medical records had "accidentally" been destroyed.
I don't want to think about the fact that we're actually developing Dr. Google to aid in this effort when my conditions are so rare Doctors already have to Google them to educate themselves because they don't ordinarily humble themselves and ask a well-known, respected expert that's studied and experienced the disease firsthand - me.
Most people think I'm a Doctor. Why can't I be respected for knowing my own body better than anyone else? Why don't they have patients teaching about illnesses at medical schools? Wouldn't it teach more kindness, compassion, empathy and understanding to Physicians? I am not even allowed speak for myself.
I don't want to be overlooked. I don't want to be invisible. I don't want to be forgotten. I don't want to be left off of guest lists even though people know I can't attend.
I don't want to die with a tombstone that says, "I told you I was sick", "You should've listened", or "I told you so". I don't want to die because I was right, but that's my biggest fear. I'm scared the medical profession as a whole will continue to ignore my cries, my pleas, my reasonings, my science, my test results, my reality, and my life.
Then, I hear, "Well, you don't look sick." What's the appropriate response to that? Can you tell me exactly what sick looks like?
While we're at it. Let's address Karen's and her associates. Did you know she had something similar to me, but Dallas Karen doesn't recall exactly what it is named. Her cousin used essential oils and now she's fine! Then, there's the Karen in Fort Worth, her sister had it. She went to a Personal Trainer and Nutritionist. She was just fat. She's fine now that she's lost the weight. She teaches classes at the Y! And, don't forget my friend Karen from Houston. She went to a Revival and the faith healer laid hands upon her. She's healed now too. Oh! There's Austin Karen's friend. It turns out, she was depressed. A good Psychiatrist fixed her right up. (For the record, I've done everything listed and more.)
I'm not afraid of the isolation. We're old friends. I usually protect my privacy although I'm open and honest. It's an odd, precarious balance that I manage like a seasoned Ring Master at The Big Top of Life. Quarantine doesn't scare you when you missed 40% of the days you were supposed to be in high school with your peers at home alone (before social media and the internet kids) with a book and only four channels on daytime television. We didn't have anything that delivered except pizza and the only thing that streamed was water. I survived teen angst with a handful of friends and one Teacher on my side.
I survived that. I persevered. I persisted. I succeeded beyond my wildest dreams and expectations. I did and accomplished things that I never thought I was capable of because I felt like damaged goods due to chronic illness. People that were important in my life said I'd never amount to anything which propelled me further. They never believed I was sick then and don't believe I'm sick now. Most of my own family has abandoned me.
Isolation doesn't scare me. Hospitals don't scare me. They're almost like a home away from home. I'm used to the confinement and remoteness you're all complaining about. It's been my daily life for thirteen years.
For those of you that don't know or are unaware, I'm immune compromised and on immunosuppressive therapies. I have a rare autoimmune disease called Behcet's Disease, but I hit the BD lotto. A small percentage of us zebras, are actually unicorns because we're so rare. I'm a unicorn. I hit the genetic jackpot. I have Neuro-Behcet's Disease which effects my brain as well. Every system in my body is effected. I also have recurrent cancer.
I'm not disposable. I'm only forty-two years old. I have a family. Please don't stop using common sense and good hygiene when this crisis has subsided because there are a lot of precious people I have the pleasure of knowing who's lives depend upon it - not just mine. I've already lost too many friends. I don't want to lose one more. One is one too many.