When people ask me how I’m feeling and I say “I’m tired,” they assume I’m talking about the chronic fatigue from all my illnesses. Having one illness can be exhausting, let alone five. However, when I say I’m tired, I’m also referring to another burden many sick people face in addition to pain, fatigue, depression, and disabilities–it’s the bureaucratic red tape in dealing with hospitals, insurance companies, Medicaid, Social Security, and pharmacies. The paperwork alone makes being a patient a job (only it’s a job with no salary ). In addition to the other roles we play in life (spouse, parent, employee, student, friend), we are “professional patients.” Sometimes, I do speak up and I have successfully advocated for myself particularly in dealing with mental health discrimination from doctors or nurses. However, if I spoke up every time someone made a crack about bipolar disorder or mental illness at a social gathering, I’d never stop talking. If I spoke up every time I entered a restaurant or store that’s not disability-accessible, I’d never stop talking.
Sometimes Our Choices Are Limited
I am fortunate to have a neurologist who takes me seriously. However, not everyone has choices such as some people living in rural areas who do get stuck with doctors who tell them “the pain is in your head” or “not that bad.” (I have heard stories from some readers who are currently in this position but I should also note that there are people living in these areas who are fortunate to have great healthcare professionals.) Sometimes, financial constraints from insurance companies also take away people’s choices.
Speaking Up and Not Speaking Up
I carry a cane for my Myasthenia Gravis. This year, I went to an art store. I had a hard time getting in because the door was so heavy. I pointed it out to the staff who were taken by surprise. They said, “Oh the door is like that because of the winter.” It was already August! The next time I went to the store, I was able to get in easily. However, it’s still not accessible for people who are in wheelchairs, which makes me angry as I think about many readers of this blog or my friends with muscular dystrophy who are in wheelchairs. Way back in August, I also has a particularly painful episode of polycystic ovarian syndrome (PCOS) and was bedridden for three days. At one point, I was able to get myself to a local Italian grocery store, which is like the Disneyland of grocery stores. They make a Bianca pizza with basil, which has calmed my PCOS pain in the past. When I got there, the disability accessible entrance was not working. I could barely stand up straight so there was no way I was going to speak to the manager. To top it off, they informed me that that particular grocery store does not make Bianca unlike all the other stores in the chain. I felt like Florida in Good Times and I wanted to scream, “Damn, damn, damn!”
Depression and Anxiety
When I’m struggling with depression, dealing with red tape (like calling the hospital for the umpteenth time because they’ve misplaced my records) makes me anxious. Physical pain can be paralyzing. Mental pain can also be paralyzing. Sometimes, we need the help of our loved ones in advocating for ourselves. We’re not lazy. We want to get better. We need you.
My Mom’s “Norma Rae” Moment
About six years ago, when I was bedridden all the time, my mom went to the pharmacy. There was a mix up and they gave me fifteen days of a certain Myasthenia medication (instead of the prescribed 30 days). When my mom showed the pharmacist my bottle, he acknowledged the mistake but said he couldn’t do anything about it because the computer said they gave me thirty days. My mom said, “You can always reverse a spreadsheet error; you cannot reverse the loss of human life.” The pharmacist agreed but said the insurance company would never allowed it. My mom insisted on speaking to the insurance company. I’ve been told that at this point, everyone in the pharmacy was watching this go down. The insurance rep insisted that he could not authorize the other fifteen days because the computer said so. To which my mom responded, “Can you give me your name? I need to have it when I sue your company after my daughter dies from not taking her medication.” The rep immediately relented, and the whole pharmacy erupted into applause! The pharmacist even told my mom he wished they could hire her. I call it my mom’s Norma Rae moment.
–Your Stylist, Jessica Gimeno
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