It’s Not Urgent and They Don’t Care

By Mia Maysack, PNN Columnist

There are no words to convey the extent that I, along with so many others, have endured medical trauma. It’s even more impossible for us to get those who haven't to understand what it's like or the toll that it takes.

A loved one of mine had an injury not too long ago that required a small dose of medical hoop jumping. Just the tip of the broken-healthcare-system-iceberg was enough to leave a lasting impression on them, to the extent they still haven't stopped complaining about it.

But when I attempted to express my own fresh experience with said iceberg, this same person described me as "too sensitive." That is dreadfully inaccurate, especially when you consider I've lived this way for over two decades and they had one adverse experience.

My aim is not to belittle or attempt competitive victimization. I understand how health problems impact us on different levels and in various ways. I simply find the lack of empathy -- yet the simultaneous expectation of it -- to be painfully fascinating.

Within the last few weeks, I've been hospitalized multiple times, essentially back-to-back for the same issue. That's part of what being chronically ill looks like. The difference between these recent visits, as opposed to all the others, is the spite I feel for providers who are supposed to be working for me.

I currently don’t have a primary care provider, so my only option when I have an urgent need is to go to a hospital emergency department. I was in one recently at two o’clock in the morning, freezing on a cot in an isolated exam room.

A nurse came in for the rundown as to why I was there, followed by a brief appearance from a doctor who didn't make eye contact or even face me. He kept his back turned while working on a computer.

The nurse proceeded to speak about me and my situation with Doctor Awesome, as if I was not even there. I interrupted their conversation, because I’ve already endured enough lack of bedside manner and respectfully expressed my concerns and wishes.  I asked for an exam and tests to ensure my medical issue wasn’t progressing, I also needed a prescription to relieve side effects from a medicine I was taking to manage my complications.

After laying all this out in a concise, professional manner, Dr. Awesome finally decides to turn around to face me and dryly asks, “So what brings you in tonight?”

Stunned, I politely responded that I’d previously been to this ER and was advised to return if needed. His reply was that my requests are more of a “clinic thing” and “weren’t necessary.” He then dismissed himself and I did not see him again for the hours I was left alone there. He did not come back to check on me before discharge or bother to report the results of my testing. No one did.

An assistant I hadn’t seen before eventually popped in and provided more warmth than anyone else I’d encountered, just by saying, “Awww, you do not look like you feel very well.” 

I thanked her for the acknowledgement and asked for an exam from anybody who was qualified -- it certainly didn’t need to be Dr. Awesome. She was appalled that I had to ask and left promptly to flag someone down.

So now another person I had never met and who didn’t bother introducing themselves, came in and spent less than a minute with me before they left.

At a different point in my journey, this sort of encounter would’ve completely shattered me, because of how low and how long I’ve been knocked down by those entrusted to aid in healing

Those days are over. Today, I’ll stop at nothing to pursue and obtain what’s in my best interests. Instead of feeling depleted after mistreatment like this, I internalize it as empowerment. I’ve made the decision to give up on them instead of myself, and to continue battling for the sake of my life quality. Even if that means fighting against the harm that they vowed not to inflict in the first place. 

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

Healthcare Workers Plead for Americans to Wear Masks

By Anna Almendrala, Kaiser Health News

When an employee told a group of 20-somethings they needed face masks to enter his fast-food restaurant, one woman fired off a stream of expletives. “Isn’t this Orange County?” snapped a man in the group. “We don’t have to wear masks!”

The curses came as a shock, but not really a surprise, to Nilu Patel, a certified registered nurse anesthetist at nearby University of California-Irvine Medical Center, who observed the conflict while waiting for takeout. Health care workers suffer these angry encounters daily as they move between treacherous hospital settings and their communities, where mixed messaging from politicians has muddied common-sense public health precautions.

“Health care workers are scared, but we show up to work every single day,” Patel said. Wearing masks, she said, “is a very small thing to ask.”

Patel administers anesthesia to patients in the operating room, and her husband is also a health care worker. They’ve suffered sleepless nights worrying about how to keep their two young children safe and schooled at home. The small but vocal chorus of people who view face coverings as a violation of their rights makes it all worse, she said.

That resistance to the public health advice didn’t grow in a vacuum. Health care workers blame political leadership at all levels, from President Donald Trump on down, for issuing confusing and contradictory messages.

“Our leaders have not been pushing that this is something really serious,” said Jewell Harris Jordan, a 47-year-old registered nurse at the Kaiser Permanente Oakland Medical Center in Oakland, California. She’s distraught that some Americans see mandates for face coverings as an infringement upon their rights instead of a show of solidarity with health care workers.

“If you come into the hospital and you’re sick, I’m going to take care of you,” Jordan said. “But damn, you would think you would want to try to protect the people that are trying to keep you safe.”

Mixed Messages

In Orange County, where Patel works, mask orders are particularly controversial. The county’s chief health officer, Dr. Nichole Quick, resigned June 8 after being threatened for requiring residents to wear them in public. Three days later, county officials rescinded the requirement. On June 18, a few days after Patel visited the restaurant, Gov. Gavin Newsom issued a statewide mandate.

Meanwhile, cases and hospitalizations continue to rise in Orange County.

The county’s flip-flop illustrates the national conflict over masks. When the coronavirus outbreak emerged in February, officials from the U.S. Centers for Disease Control and Prevention discouraged the public from buying masks, which were needed by health care workers. It wasn’t until April that federal officials began advising most everyone to wear cloth face coverings in public.

One recent study showed that masks can reduce the risk of coronavirus infection, especially in combination with physical distancing. Another study linked policies in 15 states and Washington, D.C., mandating community use of face coverings with a decline in the daily COVID-19 growth rate and estimated that as many as 450,000 cases had been prevented as of May 22.

But the use of masks has become politicized. Trump’s inconsistency and nonchalance about them sowed doubt in the minds of millions who respect him, said Jordan, the Oakland nurse. That has led to “very disheartening and really disrespectful” rejection of masks.

“They truly should have just made masks mandatory throughout the country, period,” said Jordan, 47. Out of fear of infecting her family with the virus, she hasn’t flown to see her mother or two adult children on the East Coast during the pandemic, Jordan said.

But a mandate doesn’t necessarily mean authorities have the ability or will to enforce it. In California, where the governor left enforcement up to local governments, some sheriff’s departments have said it would be inappropriate to penalize mask violations.

This has prompted some health care workers to make personal appeals to the public.

After the Fresno County Sheriff-Coroner’s Office announced it didn’t have the resources to enforce Newsom’s mandate, Amy Arlund, a 45-year-old nurse at the COVID unit at the Kaiser Permanente Fresno Medical Center, took to her Facebook account to plead with friends and family about the need to wear masks.

“You better pray that all the nurses aren’t already out sick or dead because people chose not to wear a mask. Please tell me my life is worth a LITTLE of your discomfort?”

— Amy Arlund, Nurse

“If I’m wrong, you wore a silly mask and you didn’t like it,” she posted on June 23. “If I’m right and you don’t wear a mask, you better pray that all the nurses aren’t already out sick or dead because people chose not to wear a mask. Please tell me my life is worth a LITTLE of your discomfort?”

To protect her family, Arlund lives in a “zone” of her house that no other member may enter. When she must interact with her 9-year-old daughter to help her with school assignments, they each wear masks and sit 3 feet apart.

Mask Shaming

Every negative interaction about masks stings in the light of her family’s sacrifices, said Arlund. She cites a woman who approached her husband at a local hardware store to say he looked “ridiculous” in the N95 mask he was wearing.

“It’s like mask-shaming, and we’re shaming in the wrong direction,” Arlund said. “He does it to protect you, you cranky hag!”

After seeing a Facebook comment alleging that face masks can cause low oxygen levels, Dr. Megan Hall decided to publish a small experiment. Hall, a pediatrician at the Conway Medical Center in Myrtle Beach, South Carolina, wore different kinds of medical masks for five minutes and then took photos of her oxygen saturation levels, as measured by her pulse oximeter. As she predicted, there was no appreciable difference in oxygen levels. She posted the photo collection on June 22, and it quickly went viral.

“Some of our officials and leaders have not taken the best precautions,” said Hall, who hopes for “a change of heart” about masks among local officials and the public. South Carolina Gov. Henry McMaster has urged residents to wear face coverings in public, but he said a statewide mandate was unenforceable.

In Florida, where Gov. Ron DeSantis has resisted calls for a statewide order on masks despite a massive surge of COVID-19 cases and hospitalizations, Cynthia Butler, 62, recently asked a young man at the register of a pet store why he wasn’t wearing a mask.

“His tone was more like, this whole mask thing is ridiculous,” said Butler, a registered nurse at Fawcett Memorial Hospital in Port Charlotte. She didn’t tell him that she had just recovered from a COVID-19 infection contracted at work. The exchange saddened her, but she hasn’t the time to lecture everyone she encounters without a mask — about three-quarters of her community, Butler estimated.

“They may think you’re stepping on their rights,” she said. “It’s not anything I want to get shot over.”

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

Backlash Against Nurse Who Mocks Patients for Faking Illness

By Crystal Lindell, PNN Columnist

You may have seen it by now. In a short, 15-second video, a nurse plays herself as well as a patient, who appears to be coughing and having trouble breathing. In the video, the nurse starts dancing and ignoring the patient.

The caption reads: “We know when y’all are faking.”

I have to tell you, it’s infuriating to watch.

I’m also wondering what she thinks would be the motivation to fake a cough. It’s not as though they typically treat coughs with pain medication. Is it because she thinks the patient just wants attention? Is that what’s happening?  

As a chronic pain patient who has been in and out of hospitals and doctor’s offices over the years, it’s my worst nightmare. To have a medical professional ignore me and my very real pain because they think they possess some special power that allows them to know with 100 percent certainty that someone is faking.  

I’m not alone in my outrage. The video inspired a viral hashtag, “PatientsAreNotFaking” with countless people sharing why the video wasn’t just annoying, but also dangerous.

Of course. I have my own stories. Doctors and nurses have brushed me off. There were the countless ER doctors who insisted that my multiple visits for abdominal pain were simply heartburn. One doctor even said to me, “It’s not your gallbladder.” 

It was my gallbladder.  

There was also the nurse who ignored my pleas for help after giving me a shot of pain medication that immediately made me nauseous. She told me to “drink some water” and sent me home instead of giving me an easy anti-nausea shot.

I threw up three times on the drive home and then multiple times for the next 10 hours. It was one of the worst nights of my life.  

And then there was the rheumatologist years ago who so easily could have caught my hypermobile Ehlers Danlos syndrome. I had gone to see him because of my unexplained rib pain, and as he examined me, he moved my leg, looked up and said, “Your knee isn’t supposed to bend that way.” Then he shrugged and told me that nothing was wrong with me.  

It would take four years before I finally got the hEDS diagnosis that explained my daily, debilitating chronic pain. 

But let’s take things one step further. Let’s enter the world of the video. Let’s assume patients are faking. So what? What’s the worst-case scenario? Medical professionals have to, God forbid, check in on a patient? Isn’t that their job anyway? 

This issue especially hits close to home for chronic pain patients. Every medical professional’s worst fear seems to be that they’ll give opioids to someone who just needs them because they’re addicted. And I have to ask, again, so what?  

Here’s the two scenarios if you give someone opioids in that situation: 

1. They aren’t faking and you’re helping someone who’s dealing with legitimate physical pain.

2. You’re giving a safe, controlled supply of opioids to someone who’s suffering from such awful withdrawal that they have resorted to trying to get to pain medication at an ER. Oh no! That might accidentally help someone? The horror!

Yes, giving pain medication to people dealing with addiction could lead to a flood of patients in the ER asking for opioids. Honestly, that’s why I support making hydrocodone OTC. It would keep people who are dealing with minor pain out of the ER, as well as those dealing with addiction and withdrawal. It might also prevent many of the overdoses caused by people buying counterfeit drugs off the street. 

The thing is, it’s human nature to assume someone is faking. It’s actually a defense mechanism. Medical professionals see so many sick people in their work that for many the only way they can cope is to convince themselves that most of them are probably faking. It’s much easier to believe that than it is to believe that so many people are suffering.  

The other issue is that people’s instincts are awful. They are often based on subconscious prejudice that they may not even realize is a factor. It’s human nature to separate yourself from other groups as a form of self-preservation. Unfortunately, that leads to a lot of medical professionals assuming that any patient complaining of pain is probably faking it. 

The fact that the nurse who made this particular video, Danyelle Solie, did nothing but double down when faced with criticism shows how poorly-matched she is her for job.  Solie told a Canadian website she’s worked in healthcare for five years.

“I absolutely will not be bullied into apologising or deleting a video because some people disagree with me,” she said in a Tweet thread. “Humor has always been what made me stand out to the people I work with and the patients I help.”

Solie regularly posts comical videos online using the name “D Rose.” Some videos make fun of herself and others make fun of patients or the healthcare system in general. The one about patients faking has been viewed about 15 million times. 

We should expect more from medical professionals. They should be able to wade past their subconscious instincts and make an effort to treat patients fairly. They also shouldn’t joke about such dangerous things.  

And when in doubt? Here’s some advice to all the medical professionals out there: Just assume the patient is telling the truth. Trust me, it’s what you’ll want when you get sick.  

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS.  

How to Prepare for a Scheduled Hospitalization

By Ellen Lenox Smith, Columnist

No one enjoys the experience of being admitted to the hospital. Indeed, hospitalization can provoke extreme anxiety, which does not contribute to successful outcomes in any medical procedure.

Proper preparation before you go to the hospital not only reduces stress, but enhances the probability of a successful medical experience and helps promote a smoother healing process – all of which lead to considerable benefits to the patient.

For example, while recently preparing for a revised neck fusion, I realized that eating would become an immediate issue because nutrition is so important for healing. I don’t want to rely solely on hospital food, so I am preparing meals that I puree and freeze for my husband to bring to the hospital that I can sip through a straw.

Here is a list of other things I plan on doing:

• I plan to arrive with all of my compounded medications in their labeled containers, along with my regular pharmaceutical drugs, so I will not miss any scheduled doses.
• I will bring my entire medical folder, which includes my name, address, insurance coverage, contact information for my primary care doctor, pharmacy and nurse case manager, a list of medications and dosages, a list of medications I am sensitive to, previous surgeries, and my diagnoses.
• I will also include a list of Do’s and Don’ts to help keep the staff educated about Ehlers Danlos Syndrome and keep me safe when I might not be able to advocate for myself.
• I will pack my supplements that I will take after the surgery, so my body is allowed to quickly return to the routine it is used to.
• I will bring a special pillow that I sleep with that keeps my head in the correct position all night long (I use the Therapeutica Sleeping Pillow).
• I will give to the staff my list of food sensitivities and request to meet with the hospital dietician in hopes of getting food delivered that I can metabolize.
• I will pack t-shirts, loose flannel pants and warm socks so I can walk around the halls comfortably, instead of having to wear those lovely gowns you wake up from surgery in!
• I will bring a small bag of toiletries I prefer to use, along with a comb, brush and a toothbrush since what they provide always seems to be so skimpy.
• I will prepare a list of friends and family phone numbers for my husband/caregiver to contact after the surgery is completed.
• I will bring my Living Will and any needed directives.
• I will wear my medical alert bracelet and will ask that they please read what is on it!
• I will bring my own BiPAP breathing machine, so I know I am sleeping with the correct readings. I’ll also have the doctor write down the exact setting in case the hospital decides to use their own machine.
• I’ll bring things to do that are simple and peaceful that will help calm me, as well as items that will help re-stimulate the mind, such as Sudoku puzzles, adult coloring books and quiet music to listen to.
• I will pack enough food for my service dog to cover a few weeks, in case we stay longer than expected. I will also make sure I have her list of shots and credentials proving she is a legal service dog.
• With serious food sensitivities, I always pack snacks.
• I will bring paper and pen to jot down things I want to remember to ask the doctor when he arrives in the room. It is not a time to count on one’s memory!
• I will bring my cellphone and charger to keep connected to the world when back in a room.
• I will bring a list of my passwords in case I need to use the internet.
• I will contact my case manager nurse to alert her of the upcoming surgery, so she is able to help assist with in any snags that might come up and arrange for home healthcare when I’m discharged from the hospital.
• Many of my surgeries are out-of-state, so I make sure my primary care provider clears me for surgery in writing and sends a copy to the hospital. I’ll also bring a hard copy with me, in case they don’t get it or it is misplaced.

Anything a patient can do to simplify the hospitalization is worthwhile! For those of us with complicated and rare medical conditions, we must be prepared to advocate for ourselves. I have found that, for the most part, hospital staff does appreciate enlightened input from patients on best practices and how to keep us safe from harm.

As effective patient advocates, we need to educate others not only for our own safety, but to benefit future patients with our condition.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.