The Realities of Being Chronically Ill - A Pissed Off Rant In A Toilet Paper Obsessed World
Process Improvement & Security (ret)
May 14,2020 at 6:26PM UTC
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.
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This coworker and I have co-dependent positions with shared responsibilities. When there is an event or a situation that is more stressful than usual, more often than not they call out. I'm left to answer to the boss on my own, or to navigate through a stressful day without my partner. How could I start a reasonable discussion about this without coming across as insensitive?
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Job marketability - my career has been up and down.
I have always been willing to make adjustments to ensure I keep my family well taken care of. However, this is a different job market. It is the job market we always knew was coming I am realizing I am not as well prepared for it as I thought I was. This market is going to require skills and knowledge. We have moved from the post pandemic job market which was "Open to all Employees" because the market was ramping up into the "Employer driven market" Show me what you got/What can you do to move the bottom line?
Time to rewrite my resume. UGH!!!! Something I hate. Time to reassess my skills and ensure my resume says leader and dynamic. Time to let go of the past and grow so that I may move into the future.
This job market is driven by AI technology and it is not changing. Resumes are rejected before they are looked at. We have to reassess who we are and how we get to the next level. This is an extremally tight market and it will take time. Take advantage of whatever you have to leverage your knowledge and skills.
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I am having such a difficult time obtaining remote work.
I never thought it would be this difficult. I thought it may have been my resume so I had a few done professionally and still rejection email after rejection email. This is so discouraging. Wishing success to us all during these difficult times!
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Am I barking up the wrong ladder?
And, if I am not, how do I constructively talk to my boss?
I work a union position as web content lead for a state agency. The position is newer and still has some fleshing out to do when it comes to the full scope, but my position description is pretty clear that I handle the management of our public facing sites and serve as advisor and journey mapper as we modernize those we have.
My boss is from the private sector. This their first time managing and we are a team of four. There is a lot to unpack here but I will try to keep this lean.
One their former bosses (who is a friend of mine and sometimes tries to help me navigate the situation) described my boss as "Ready, Fire, Aim!" which is accurate. They have a history of rushing into decisions (often that the team needs to fix), glazing over during any detailed information anyone gives and rushing us along, and generally charging ahead and then being demonstrably upset when they are stalled by the processes necessary when serving the public. They have (by their own and their bosses' admission) poor delegation skills and tend to micromanage and take other peoples work without telling them when stressed, which is often. They routinely have issues with one or more teammates who are a bit more set in their ways. This is the tip of the iceberg.
They are not a bad person, and are good at some things. They are a terrific salesperson, excellent speaker, protective of their crew and flexible about personal matters. It's nice that they have a lot of vision and ambition, too. We need that! It's just that I and the team wish we had a bit more insight into where they were going before they go there.
Recently we started wrapping up a major website revision project which I am kind of leading (I'm a collaborative sort and this is a very collaborative effort). They announced to me in an off hand manner during a 1x1 that they were moving ahead with several other major projects in my focus are and I was like, oh, this is the first I have heard of that. They seemed very nonchalant about this fact and kept right on talking, like oh, yah, I'm doing that and that and that. I let them know about some preliminary hurtles they would need to address and they were like, ok, thanks.
I have to admit I am a bit insulted. I'm trying to keep it in perspective and think this is obviously in keeping with how they are on a regular basis. But it does affect my work. On the one hand, if they charge ahead and I am blindsided, I won't be able to contribute. On the other if they just take the work away I don't get the growth and experience and chances are very likely I will end up fixing the mistakes.
Would I be stepping out of my boundaries to say hey, this is part of the scope of my job and I would like to understand your vision and timeline and be a part of this? And, if it comes to it, to explain that these things are in my job description? We are a union shop and it's generally not considered cool to duplicate duties. I'm just lost as to how to set my boundaries with this person without starting a war, or if I even should.
Thanks for listening. :)
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Sometimes the best-fit career path isn't obvious at first.
Take the time to reflect on your journey and don't be afraid to pivot when needed.
Watch this video to learn how to optimize your potential: https://www.youtube.com/watch?v=z1ZwZo0mMVY
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I have to just say to all employers.
Employers that tout "disability inclusion" should not just limit to physical disability. All disabilities are not visible. As someone with multiple sclerosis, please ensure that your "disability inclusion" actually includes those with mental disability, emotional disability and intellectual disability. "Disabled" does not equate to "incapable" or "unable". We are just looking for the chance to join the work force and continue our lives...Give us a shot...we don't bite and we won't disappoint.