It’s 3:40 am. I went to bed at 8 pm since I didn’t sleep the whole night of my depressive episode, wasn’t able to calm myself down until noon, and only got 2 hours of sleep in the afternoon before I got woken up by unnecessary phone calls. Two hours out of 24 when I’m used to sleeping for at least 8-12 is not enough. So of course now I’m wide awake after my bladder woke me up and I had to take more pain meds. I’m sitting in bed with nothing but the light of my iPad, Aurora on my feet and David snoring next to me.
This is going to be a rant about the difficulty chronically ill patients have in getting leave of absence paperwork filled out, because I’ve had to have it done probably at least eight or nine times this calendar year. And it seems that there’s a problem every single time.
My experiences yesterday afternoon were aggravating and really made me think about the state of healthcare in the United States and all the red tape involved with everything nowadays. I had asked my neurosurgeon to fill out leave of absence paperwork for the month before the surgery, given as how I can’t work because of the effects of the tumor. So I was woken up yesterday afternoon (I thought to silence my phone, but not my iPad or iPod) after having only gotten 2 hours of sleep by his nurse calling. She said they couldn’t fill out the paperwork because it didn’t have to do with the surgery.
So the fact that I have a brain tumor that is causing me symptoms that are making me unable to work that said surgeon will be removing next month has nothing to with that fact that he will indeed be removing it next month? Do you see how little sense that makes? She said she doubted HR would accept the paperwork, which is hilarious because it was the lady I spoke to in HR last week who told me to have my surgeon fill out that paperwork, so I know it would have been accepted. But I forgot that fact as I sleepily stumbled my way through the phone conversation. Anyway, the nurse suggested I get my endocrinologist to fill out the paperwork since I stopped the medication at her recommendation and am having these symptoms because of it. Thankfully, I contacted my endocrinologist and she is indeed willing to fill out the paperwork.
But do you see how stupid that all is? The nurse was basically saying, “Well, it’s your endocrinologist’s fault you’re having these symptoms, so make her fill out the paperwork.” No, lady, it’s the brain tumor’s fault. Which is under your purview because it’s a neurosurgical problem. Why don’t we all just get in a sandbox and throw sand at each other like the children you are acting like? But people are so unwilling to fill out paperwork that it makes it unnecessarily stressful for the patients who have to try and find the doctors who will. I’ve had to fight tooth and nail sometimes to get doctors to fill out leave of absence paperwork for something that is under their purview. My neurologist never even responded to me after two attempts to get him to fill out intermittent leave of absence paperwork for migraines. So I had to have my primary care physician do it, even though technically it was less appropriate for her to fill it out than my neurologist.
Then there was the oh so glorious time in May that I had to have intermittent leave paperwork refilled out because HR accused me of abusing it based on my number of absences. And at the same time, I had to have my poor primary care doctor, God bless her, fill out about five different sets of paperwork, including ADA disability paperwork that my boss claimed I needed because I couldn’t perform a certain position in my job description due to the pain I was having. The day my boss confronted me with this stack of literally 20 sheets of paper that myself and my doctor had to fill out, I sat in his office sobbing through the conference call with HR. I felt attacked and belittled. I was chronically ill. I had multiple medical conditions causing multiple problems, and management seemed to be doing nothing but making it as challenging as possible for me to not only get time off, but to get paid for it. I look back on that day in anger every time I see more leave of absence paperwork that needs to be filled out.
At least this should be the end of it. My paperwork for June 10th-August 8th I’m fairly certain has gone through, my endocrinologist will fill out August 8th-September 7th, and the neurosurgeon will fill out September 8th-October 24th. Then I finally go back to work and all should be well.
Why is everything made so hard for us? Why can’t people just believe we are sick and want to help us? Instead, we have to literally prove how sick we are to people who only care about whether every I is dotted and every t is crossed. They don’t give a crap about the patients themselves and what they’re going through. It makes me feel harassed. It makes me feel like people think I’m lying. And above all, it just makes me angry. Angry that those of us with chronic illnesses have to fight so hard just to get people to believe us. Invisible illnesses indeed.