The Truth: Why Don’t Chronically Ill People Speak Up More Often?

microphone-1370587-mWhen 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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Hi there! I am a patient advocate, writer, and public speaker most well known for my TEDx Talk, “How to Get Stuff Done When You Are Depressed.” As someone who is juggling 5 illnesses: bipolar 2, myasthenia gravis, endometriosis, psoriasis, and asthma, I’m passionate about helping people who navigate life with both chronic physical & emotional pain. If you’re interested in hiring me to speak at your event, check out the CONTACT tab.

2 thoughts on “The Truth: Why Don’t Chronically Ill People Speak Up More Often?

  • November 20, 2014 at 3:18 am

    Ah, and I read this after I had a week of hell in the hospital. I also have bipolar disorder, along with a neuromuscular disorder. I ended up going to a psych hospital here in the city (of Chicago) because my medication had stopped working as well as it should, which is common in the winter, and I haven’t set up a psychiatrist because I’m new to this area. I really had no choice in order to quickly see a psychiatrist. Once evaluated they told me I had to be admitted, but that they wouldn’t take me because I was in a wheelchair and had a feeding tube and they were not attached to a medical hospital like most psych units are. Let me add here that it is infrequent for me to use my feeding tube, I had brought an extra in case of emergency, and I can change it on my own, not needing the help of a doctor. I am also fully functional on my own and being able to do my ADLs. (Let me add that I got to the hospital at 6:16pm.) I was told they would call around to actual hospital buildings to have me transferred. Skip forward to 3:00am where I have had no food since around 2:00pm, no sleep, and no psychiatric or medical medications. I was shaking and having spasms from pain, absolutely crying, and no word on a transfer yet. They also could not give me medication. Around 4:00am I received a blanket and was told to go to bed, something impossible to do in a chair especially if you are an insomniac and haven’t slept a night without medication since the age of eight (now 28). 9:00am rolls around and two nursing supervisors came in to interview me to ensure I could stay there because no other hospital in the entire city of Chicago would supposedly take me. I didn’t get into my room until 4:25pm and not medicated until the next day. When my friend came to visit they made her leave her service dog out in the car, something completely illegal by the ADA. By law the only way the hospital would have been able to say they couldn’t keep me is if it wasn’t accessible, in which it was. I will now be filing a suit against the hospital for discrimination. Hmm…Ms. Wheelchair Illinois, my platform being positive mental health for the disabled and educating society…this suit will fit right in with my reign. Oh, and one of the more terrible things? I admitted myself so that I could get hooked up with a psychiatrist and left without a psychiatrist willing to take me as a client five days later.

    • November 20, 2014 at 7:19 pm

      Thank you, Pearl, for sharing. This was so brave of you. I am sorry you are going through this. It is sad but not surprising. Prayers for your health and wellbeing.


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