New Perspectives, Christmas Eve, and Ugly Crying

I belong to a couple of Long Covid groups on Facebook; one is a group called Survivor Corp, which is a great public group to join for information and support if you or someone you know is suffering from the after-effects of Covid.  A woman whose husband has been dealing with Long Covid for almost 3 years recently posted something that really resonated with me.  She said that her husband had attended appointment after appointment with every type of specialist imaginable, and there just weren't any answers or resolutions for his symptoms.  (I know this scenario all too well myself.) She said when they went to see a cardiologist, they were given the best advice of all.  He told them that if her husband had not improved significantly after 4 months with Long Covid, the chance of recovery wasn't very likely to happen.  BUT, he told them that in 2 years her husband would be feeling much better.  He told them it wouldn't be because the symptoms had noticeably improved, but because they would have had time to grieve the loss of the life they'd had, time to grieve the changes and the illness, and would have learned their "new normal" though she said she hated that term.  (As do I at this point.)  She said it really was true; life was better now, after 2 years, than it had been because they'd learned how to accommodate for his limitations.  She said their children had learned that "Dad" couldn't do certain things with them (playing in the yard, going on amusement park rides, etc.).  She said her husband's friends no longer looked at him sympathetically when they saw him with his cane or riding his mobility scooter; that they'd adjusted to the changes and now talk and joke with him the way they had done before he had Long Covid.  That new perspective is something I need to work on for myself...

I have had Long Covid for 2 years now, and I haven't gotten past that grieving stage yet.  There are still days that are so hard I have fleeting thoughts that maybe it would have been better to have not survived Covid than to have had a relatively mild case, but then dealt with all of this for the past 2 years.  I would estimate that 3-4 days out of every 7 days of the week I have tears running down my cheeks while my husband helps me with my personal care and getting dressed because I'm so sad and angry and humiliated that I need someone to help me get dressed every day, someone to assist me with regular, routine tasks, with activities of daily living and even some executive functioning skills.  

My therapist and my disability lawyer have both basically given me the same advice: You can only control your own actions; don't worry about the things you can't control.  Well, I really took that to heart this year for Christmas.  I began my shopping back in early September.  I carefully chose everyone's gifts based on what I knew about them and their personal tastes.  I purchased multiple gift bags and gift boxes to make wrapping easier because I knew it would be exhausting.  I demanded that my husband get our living room remodel finished before Christmas Eve, which I was hosting.  I went all out.  I bought new matching paper plates, napkins, soup bowls, plastic cups, foam coffee cups, sparkly plastic spoons, the works.  I even bought a Christmas dress and "Merry Christmas" leggings.  I went all out in ways I never had before, and I have been hosting a "Soups and Snacks" Christmas gathering for the past 17 years!  I was controlling the things I could, and I wanted everything to be PERFECT.  And, honestly, it was. 

And then I paid for it.

On Christmas Day my head was pounding and I had dizzy spells throughout the day. I was completely exhausted.  The week between Christmas and New Year is a blur.  I honestly don't even remember those 7 days, and I didn't leave the house for 13 days following Christmas.  I was exhausted; mentally, emotionally, cognitively, physically, I was completely drained.  

This past week involved some ugly crying too...Thinking about school starting back up prompted me to think about what I would have done in class on that first day after break.  I started thinking about how I would give them Bell Work, with directions projected on the whiteboard.  

"Write one paragraph sharing your favorite part of Christmas break.  

Write one paragraph sharing your least favorite part of Christmas break.  

Write one paragraph sharing anything you'd like me to know, any topic you choose.  You do not have to share aloud in class, and no one will read them except me." 

I would then have used the rest of the class period to let students who DID want to talk and share things do so, using it as a speaking, listening, and asking appropriate questions lesson (which is a 6th-grade standard).  As I talked about it with my husband and daughter my longing to be teaching came back with a vengeance.  It's a physical ache in my chest, that longing to be in my classroom, to be with my kids again, to feel their energy and excitement.  I miss laughing every single day because of things my kids said or did.  I miss that feeling that I can't even describe in words when their faces light up because something "clicked" and they are learning and understanding and are developing the passion for reading and writing that I have.  There is nothing else in the world that feels the way it felt to teach and to see my kids LEARNING. 

And that's when the ugly crying happens...when I allow myself to feel the grief of no longer teaching...

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

Let's Talk Accommodations

"The Americans with Disabilities Act (ADA) became law in 1990. The ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else."  (Copyright 2017 ADA National Network. All Rights Reserved)

I think it's safe to say that most people know there are requirements for fair and equal opportunities and rights for people who have a visible disabling condition, and for the most part, I have witnessed good intentions, appropriate accommodations made, and compassion shown.  However, there are many, many "invisible" disabilities, and I don't feel those dealing with them are always aware of their rights, nor are those around them as understanding or even willing to acknowledge them.  

Depression and other mental health diseases are covered by the ADA.  Bladder and bowel problems,  neurological disorders, endocrine and circulatory problems...the list goes on and on.  These are things I feel everyone should be aware of.  No one is going to advocate for us; we need to be our own advocates and learn how to ask for what we need without shame or embarrassment or fear of judgment or criticism.  This is advice I need to take as well, but it's much easier for me to advocate for others than for myself.   I admit that wholeheartedly.

When my daughter decided on a college, decided to live on campus, and began the process of enrolling, her biggest stressor was the idea of having a complete stranger for a roommate.  I couldn't blame her; I would not have been comfortable with that either.  However, I didn't say that to her; I reminded her of all the stories about people meeting their lifelong best friends when they became college roommates, about her aunt having longtime friends who had started out as strangers she'd met at college, etc.  But, in my head, I was still feeling a lot of empathy for her because I knew I'd have those same concerns, and her feelings were valid.  Then I learned that social anxiety, if diagnosed and being treated for this condition, was a covered disability under the ADA.  Because of this, with nothing more needed than a couple of forms filled out by both her and her therapist, she was able to qualify for a single-occupant room with single-room fees waived through her rights under the ADA.  Though she didn't like the idea of "special treatment" and didn't want to be labeled as "disabled", I explained to her that she should not feel that way, that this was her right, and that she deserved to be able to feel good about her upcoming college experience.  If something was causing her so much stress that it was impacting her feelings about attending college, that absolutely was something within her rights to address.  If even one parent or one student reads this and learns about their rights regarding anxiety and/or depression, and realizes their feelings are valid and deserve to be addressed, then I have done my job with this blog.  

Advocate for yourselves, advocate for each other, and have each other's backs out there in the world, because at the end of the day, those are the things that really matter...

“Ada National Network.” ADA National Network | Information, Guidance and Training on the Americans with Disabilities Act, 22 Aug. 2023, adata.org/.