New Blog, Old Issue: Bias in Healthcare

I wrote a blog a few months back called "Overweight and Out of Shape".  After writing that blog I began doing some research on bias in healthcare, and the information I found was pretty astounding.  Bias against patients who are overweight is clearly an issue, but there is bias against women, against men, against people of color.  These biases are real issues in our healthcare system, and it's something we all need to speak out about.  We need to advocate for not only ourselves, but our fellow patients who also need to have fair, unbiased treatment.  

I recently developed a serious infection in my leg, one that could have quickly turned into a life-threatening situation had I not gone to the ER when I did.  I have severe edema in my legs, edema that has developed into lymphedema over the course of the past 2 years.  With this comes complications; one being severe skin rashes that can break open and weep lymphatic fluid.  These open wounds are ideal breeding grounds for bacteria.  Despite my best efforts, I developed cellulitis in my left leg because of this weeping wound.  

The frustrating part of this ordeal is that I contacted my cardiac P.A. a week prior to my ER visit.  I explained that my edema was at its worst, that despite taking my prescribed diuretics in the variety of combinations and dosing options we'd tried, I was more swollen than ever, that the weeping wounds on my leg were getting worse instead of better.  Her response was to make an appointment with one of two cardiologists within her practice who I'd seen previously, or to see the nutritionist.  

And there began my "bias in healthcare" dilemma.  

Cardiologist #1 had spoken to me like I was an idiot.  He was convinced I was diabetic and that my edema was because I was in active heart failure.  (Blood tests proved otherwise an hour later, but I got no apology or even acknowledgment of his errors in his assumptions.)  The next day, while consulting with me after my double heart catheterization, when I told him we had been able to get me down to "x amount" pounds of fluid off 4 months previously with heavy dose diuretics, but it all came right back, he accused me of being delusional, insisting I was claiming to have 90 pounds of fluid, which was absolutely ridiculous.  I told him no, it was only 40 pounds of excess fluid.  He vehemently insisted I weighed 50 pounds more than I did.  After my insistence, he pulled out his phone, pulled up my chart, saw that the weight I told him was correct, and ended the conversation by just leaving my hospital room.

Cardiologist #2 was very dismissive.  When I expressed concern over my edema not going down despite diuretics, his response was that everyone is made of 75% water.  Yes, but not everyone is carrying it around in their legs and abdomen to the point of having serious mobility issues...

Next, I saw a nutritionist.  She set me up with a program to log everything I ate, to track calories, fat, carbs, sodium, protein, specific vitamins, etc.  These were all things I'd been doing for the past 14 years using another popular free calorie-counting app, but I was compliant, did exactly what she'd asked of me.  The booklet she provided said, "Log without judgment" so that's what I did.  I logged absolutely every bite I took.  If I had a day of emotional eating and indulged in 4 Swiss cake rolls, I logged it because I knew there was no use in being dishonest.  That wasn't going to help HER help ME.  When I went to my next appointment, we went over my food logs, I told her I was brutally honest about everything, even on days I didn't want to be.  She commended me for that.  However, when I got home and read her notes from the visit on my online chart, she wrote that I was consuming anywhere from 4,000 to 6,000 calories a day on days that I gave in to emotional eating.  This was absolutely untrue.  My highest day ever had been 3996, and I was completely honest with her about that day, what I ate, and what events had caused me to turn to emotional eating that day.  I felt as though she didn't believe me, and was putting her presumptions in my notes even though I'd been completely honest with her despite my hesitation.  I felt a complete lack of trust in her and in the program, so I canceled my next appointment, and have not scheduled any upcoming appointments either. 

When looking further into bias in healthcare, I came across so many posts, blogs, and articles about a variety of biases people encounter every day.  I found stories about women of color being told they were predisposed to certain health conditions without actually investigating the specific symptoms they were there to address.  Others were dismissed as being menopausal rather than testing for other possible causes of symptoms.  Stress was also blamed for many patient complaints, rather than looking into other reasons patients had specific symptoms.  Many articles and personal anecdotes discussed that their stress and anxiety were caused BECAUSE OF their symptoms and lack of support from their providers rather than their symptoms being a result of stress and anxiety.  And then, of course, there was the weight bias.  Rather than acknowledging that patients of average weight often have the same health issues or ailments that overweight patients have, if a patient is overweight, the common response from providers is to suggest weight loss as a remedy to their symptoms.  

Research on the impact of obesity bias in healthcare shows an elevated risk of psychological reactions such as eating disorders, unhealthy behaviors, anxiety, and depression which can negatively affect major vital signs.  This bias also leads to resistance in seeking medical care and a lack of trust in healthcare providers, resulting in insufficient treatment for patient health and well-being.

As I stated in my original blog on this topic, I can't deny being overweight, and I'm certainly no athlete.  But you know what else?  I was "overweight and out of shape" when I graduated high school in 1992, when I took a 10-mile walking tour of D.C. in 2009, and the summer of 2021 when I was living my best life.  I was "overweight and out of shape" when I was feeling ill in November 2021, and in December 2021, and still in February 2022, when I was officially diagnosed with Long Covid.  

But, is that what's "wrong" with me?  No.  Is this "overweight and out of shape" identity something I've only taken on since being home with Covid for those 3 weeks almost 2 years ago?  Nope, not accurate either.  Should ALL healthcare providers diagnose patients equally rather than conclusively basing treatment plans on physical appearance?  Absolutely, because last I checked, just being "overweight and out of shape" never stopped me from living my best life. 

But Long Covid, and all of the many physical, emotional, and neurological symptoms that go with it definitely have.

Those are the things that a conservative estimate of 65 million people around the world with Long Covid are begging to be given; providers who look at them as individual people with very real symptoms that are tied to a horrible disease none of us want to be living with, a disease that has nothing to do with race, gender, age, weight, or socioeconomic class.

Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 21. 133-146 (2023). https://doi.org/10.1038/s4159-022-00846-2

A Birthday, A Death, A Covid Test, and A Party

Every year on my birthday, I think, "This is going to be MY year."...This year, that is the exact opposite of what I was thinking.  This year on my birthday my thoughts were more along the lines of, "Am I going to survive this year?"

It's a struggle writing this blog.  My left hand keeps spasming, so my fingers hit multiple letters at rapid-fire speed and I have to go back, delete, and attempt to retype.  That along with the struggles I already have with word-finding and needing to google similar words in order to figure out what I'm trying to say makes writing blogs a several-hour process.  My symptoms are exacerbated because I currently have Covid.  Again.  Yep, the nightmare that began October 10, 2021, is once again making its presence known.  

My birthday was Saturday.  I turned 49.  The last year of my 40's.  I didn't feel well.  We stayed home, laid low, did nothing to celebrate my day.  It was honestly a pretty depressing day.  As far as birthdays go, it was in the top 4 worst birthdays I've had (the other 3 being my 16th, 22nd, and 24th).   

To finish off the day, I received a message through social media from my ex-husband's ex-wife (who I didn't even know existed) informing me that my ex-husband had passed away.  I had no idea how that news might affect me.  I'm honestly still processing it.  On one hand, I married him, spent 3 years with him, and loved him.  He was a father figure to my son from the tiny age of 3 months through 3 years old.  He came into my life when I had hit an emotional rock bottom, and we had some really great times together.  And he was so good to my son, loved him like his own.  But on the other hand, he was abusive, both emotionally and physically.  He gave me my first black eye 2 days after our wedding.  He cracked my eye socket on my birthday.  He bruised a nerve in my back, threw a glass at me, pulled a knife on me, and refused to allow me to have contact with any of my friends, even most of my family.  He literally pulled the phone cord out of the wall when I attempted to call a friend while he was home.  It was often a scary and very isolating time in my life.  However, thinking that he just no longer exists somewhere in this world...that is a feeling I'm still trying to process.  

The next morning, I woke up feeling very stuffed up, congested, and had a "heaviness" in my head.  I took a Covid test, and it was instantly positive.  My husband and daughter also took tests, and theirs were positive as well.  All of us getting Covid was bad enough, me getting it again after still suffering from so many Long Covid complications 22 months after my first bout with Covid is pretty concerning.  I'm struggling.  I told my husband I feel like my brain is being attacked from the inside.  I don't know how else to describe it.  

My biggest disappointment of the weekend was not being able to attend a family gathering I had been looking forward to for weeks and weeks.  My aunt and uncle were celebrating their 50th anniversary, and I was sooo looking forward to seeing all my aunts, uncles, cousins, etc. whom I don't see on a regular basis.  I was absolutely devastated that I was no longer able to go because of our positive Covid tests. A lot of tears were shed as I watched the clock tick away, knowing what I was missing.  My cousin did Facetime me, which allowed me to see everyone, to watch my aunt and uncle open their gift from me, and to talk to people I hadn't seen in quite some time.  That did make me feel a little better about things, but it still, obviously, wasn't the same...

I've said it before, and I'm sure I'll say it again...Covid has RUINED my life...

I began taking a selfie on my birthday each year starting at age 46.  You can see that the two years before having Covid and the 2 years since having Covid are quite different...                             

                 

Endings, Triggers, Infections, Friendships, and Gratitude

The last couple of weeks have been rough.  Especially rough.  I knew school starting back up would be hard.  I didn't realize how hard though.  Last year I was on medical leave, so school starting was just the "official medical leave" start date.  I was still a school employee, it was still my job, my classroom, my life.  It was just on hold for a bit.  This year, everything is different.  I'm not a school employee anymore.  It's not still my job. It's not still my classroom.  That's no longer my life.  The impact of this reality has been more difficult than I ever realized or imagined. 

The things that have triggered me the most are things I had not even thought about being such severe triggers.  All the "First Day of School" pictures on social media felt like my heart was being ripped out of my chest.  Each one was another pull on my heartstrings because I should have been at school to see all those shining faces, nervous smiles, and sparkling white new shoes.  But I wasn't; I was at home trying not to think about what the date signified.  

Then, there was the unfortunate timing of my husband driving past the school, the school where I had taught for the past 14 years, on our way home from my doctor's appointment last week.  The students I'd had in my last year of teaching were outside at noon rec.  MY kids were outside at noon rec.  Even writing about it has my stomach in knots and my chest feeling tight because leaving that classroom behind still brings me physical pain each and every day.  

But this week, it was the silliest thing yet that really twisted the knife into my gut.  I began to see people sharing a promotion for a "Free Drink at Scooters" with the presentation of a school ID.  It hurt.  Plain and simple.  And yes, I know it's silly.  But that didn't change how much it hurt.  Then, yesterday, THE DAY, seeing all of the teacher friends I have or follow on social media sharing pics of their free drinks brought me to actual tears.  I had to just close my phone and not even look, not check my notifications, just remove the trigger completely.  It wasn't about the drink, it wasn't about getting something for free, and it's not like I couldn't and didn't get a yummy coffee drink today; it's that it was one more thing I'm no longer a part of because of Long Covid.  

It's that the identity I have had for the past 22 years is gone, and I don't know who I even am anymore...

A symptom I've been battling since 3-4 days before my actual positive Covid test, which we now realize was my very first symptom of Covid, is severe, pitting edema which has now developed into Lymphedema.  It has been uncontrollable despite lymphedema therapy, diuretics, compression, and all the things used to treat lymphedema.  A big part of lymphedema care is keeping the skin well-moistured because it gets stretched so tightly from the swelling.  If the skin breaks, lymphatic fluid weeps out, and this provides a beautifully fertile, absolutely ideal, breeding ground for infection.  

Unfortunately, despite my best efforts, I developed a rash that turned into blisters that turned into open wounds, and after not feeling well for a couple of days, and then having visible signs of infection along with significant pain, I went to the ER, and sure enough, I had an infection in my leg.  Treatment and healing are a long, uncomfortable process, and getting rid of the infection along with preventing it from returning while the wounds on my leg heal are the biggest and most challenging health priorities right now.  

It seems that's what my life has become; one challenge after another...but...

I recently read a quote that said:  Friends are like rainbows; they're always there to cheer you up after a storm.  

I have to say, that is absolutely true.

At the worst of times you really do learn who your truest friends are, and let me tell you, I was BLESSED WITH THE BEST.   From the friend who commented, "Once a teacher, always a teacher," on my post about Scooters to the ones who gifted us with an amazing surprise when we least expected it to those who go out of their way to ask my daughter how I'm doing when they see her at her job to those who started a GoFundMe for me when I spent 11 months battling with my Long-term Disability Insurance, to the ones who bring me coffee and stay for a visit, randomly text me just to check in, and show me dozens of little ways that I'm thought of and loved, there just aren't enough words or blog posts or poems or songs or flowers or hearts or hugs or thanks to show how much it means.  

To all of you, and you know who you are, I truly do know how lucky I am to have you in my life, and I hope every single one of you knows how humbled I am, how full of gratitude, and how truly thankful I am to be loved and cared for by you.