SPOTLIGHT ON STIGMA: Welcomed But Not Accepted

 It's something that very few would do... walk away from something they've prepared their entire life for, something that could easily disappoint an entire nation, something that many wouldn't or couldn't understand.

But Simone Biles did it at this year's Olympic Games. 

According to an article on ESPN.com, Biles said, "Once I came out here [to compete], I was like, 'No, mental is not there, so I just need to let the girls do it and focus on myself."

I applaud her courage. I have a hard time letting my mental health issues get in the way of tasks that could disappoint just one person, much less potentially an entire world of fans. 

Biles hasn't always had it easy or been a star. When she was young, she had a horrible home life until she was adopted by her maternal grandfather and his wife. She was bullied in high school due to her muscular build and was given grief by the public when it was discovered that she has ADHD. She admitted being one of the 100+ girls abused by Larry Nassar.

"Most of you know me as a happy, giggly and energetic girl. But lately... I've felt a bit broken and the more I try to shut off the voice in my head the louder it screams, Biles wrote on her social media (according to the New York Post article).

Those of us who deal with mental health issues can fully understand. Many of us have wanted to withdraw from something because it was hard on us due to our mental health issues, but we were afraid of the repercussions of doing so. We are taught to please others no matter the toll it takes on us. But while many applauded Biles' taking care of herself above the expectations of others, there is another important aspect of this news.

"USA Gymnastics released a statement July 27 declaring the Biles' withdrawal following her vault rotation was due to an unspecified 'medical issue' and she would 'be assessed daily to determine medical clearance for future competitions,'" said the New York Post.

This kind of statement just amplifies the stigma that a medical issue is a valid reason to withdraw, but not that a mental health one is. Most of the time when an athlete has to leave a competition due to a medical issue, that issue is labeled. For example, a basketball player that can't play due to a broken ankle would be listed as such, not as an "unspecified medical issue."

It's possible that Biles or her coach didn't want to specify the reason at the time the statement was released. It's also possible the USA Gymnastics didn't know the actual reason.

But it's much more likely that USA Gymnastics was trying to cover up that it was "only" a mental health issue that caused one of the greatest gymnasts of all time to quit right before a major competition.

And that's wrong.

A symptom like "brain fog" (yes, that's a real thing) can affect performance as much or more than a broken wrist for an office worker. However, it's perfectly acceptable for someone to take sick leave for a broken wrist and not be allowed to do so for the auto-immune flare-up that caused brain fog.

An anxiety attack can interfere with a job interview as much as the flu, but if you try to reschedule a job interview due to having an anxiety attack, it's very likely you won't get the job.

Mental health symptoms can be just as debilitating as physical... but so many times we can't admit it when mental health is the real issue.

We have got to continue efforts to normalize that it's okay to withdraw from something because of mental health impairments. We need to recognize that untreated mental health issues can be as deadly as physical health issues, sometimes more so.

We must continue to spotlight the stigmas that affect our daily lives and bring them to light.

(See original post for references.)

 I know that, overall, you are compassionate people and really do try.  You chose to work with young adults.  I don't think that you chose teaching just because you like kicking people when they are down.  I'm sure you feel you are doing the best thing for everyone when you don't honor a student's accommodations so that you can "be fair" to the other students.

But there are some things you may not realize.

You may not believe that these students have actual medical conditions because when you see them, you are usually seeing them at their best - on the days they are able to make it to class and get their work done.  There are many medical and psychological conditions that are cyclical.  A student might be fine for a month or more and then have a flare-up that's so bad she can hardly get out of bed.  Just because a condition isn't there 100% of the time doesn't make it not real.

You also may not realize that often those with invisible illnesses are great actors.  They work hard to cover-up the fact that they feel bad.  So even when they do make it to class, they might be a huge internal fight just to make it through the class time and learn something - and it's possible you would never know how hard they were struggling while sitting right in front of you.

It's easy to think that someone who consistently is late to class or doesn't show up is lazy.  There are many students who are.  High school and college kids ditch class all of the time.  You probably think your strict attendance policy is to help them show up.

But for those who have diagnosed mental, physical, or mental and physical issues, it's a totally different ball game.  You see, my daughter has several "invisible illnesses".  She has fibromyalgia, dysautonomia, major depressive disorder, and generalized anxiety disorder along with some other issues.

You don't see her crying because she's hurting so badly that she can't stand up to pick out her clothes for the day.  You don't see her not eat because she is nauseated from anxiety because she's behind in her schoolwork.  You don't see her try to "be normal" (for once) and go to a sporting event during a school break only to have it wipe her out for days afterward.

I understand that you probably have many in your classes that don't care.  They don't care what they learn; they don't care what grades they make; all they care about is hanging out with friends and partying.

I can't speak about every student with an invisible illness, but I have known several.  Generally, they are incredibly hardworking and care so much about doing a good job and making great grades, even with all of the obstacles they deal with daily.

These young adults have more than the average number of doctor, therapist, and specialist appointments that take time away from attending class and getting homework/studying done.

Not going to class is a necessity at times for these kids because they literally can't deal with the pain or they literally aren't able to concentrate.  They know that if they make it to class, they will be held accountable for the information so sometimes they are absent because they know they won't be able to retain what was said.  It's better to wait and get the notes later when they are able to focus.

Anxiety increases with every class missed. This starts a horrible cycle: Class was missed so the notes have to be obtained, which takes time and effort.  If there are questions about the lecture or assignment, a peer or professor has to be contacted to make it clear.  If there was a quiz, test, or in-class work done, time outside of class must be found to make it up, which takes much more time and effort than just doing it in class.  If there is a test review, these students miss this important benefit.

Spending time catching up from the missed class(es) means there may not be enough time to get the new homework or studying done before the next class.  So even if able to get to the next class, they are behind.  They are trying so hard to catch up but "brain fog" (yes, that's a real thing) won't let them concentrate.  New material is much harder to comprehend if they haven't been able to fully understand what was discussed earlier.  The anxiety increases, which makes it harder to focus on catching up and usually makes the underlying condition worse, getting even more behind.  And the cycle continues...

Think about it logically... Why would a formerly good student choose to do all that extra work day after day if it wasn't necessary?   Yes, some students get to high school or college and decide that fun is more important than grades, but those students also don't work constantly to try to make up what was missed.

This cycle is complicated further when a student feels that the teacher or school won't understand and thus doesn't feel comfortable disclosing a disability or accommodations. In this situation, the student struggles alone.

These students with health issues essentially have to teach themselves the material.  I don't want to offend, but it seems like some of the best professors and teachers automatically assume each student who isn't on time at every class is lazy and doesn't care.  In many cases, that couldn't be further from the truth.

Another argument I sometimes hear is: "When they get out in the workforce there won't be those accommodations."   I understand this point.  As a mom, I am concerned about this point.  I don't want my daughter to rely so much on her accommodations that she won't be a good employee or have a great career.

But there are several problems with that argument.  One is that an employer is paying you to work; in college, you are paying for the education.  The school is essentially the employee.  So the school should do what the student (employer) needs in order to get the training needed to later enter the workforce.

Along those same lines, when these young adults go out to get jobs, they can look for jobs that could accommodate their needs.  Jobs that include working from home, gig work, freelance, or those with flexible work hours are becoming more popular these days.  Will these young adults always be able to get these jobs that will work around their disabilities?  Maybe not, but if they know that there is no way they can work a typical 9-5 job, then they'll have to figure that out.  Penalizing them while doing what it takes to get a degree won't automatically mean they will be able to work a standard job later.

Another problem with that argument is that a young adult is just figuring all this out.  Most would agree that being a teenager or young adult can be a difficult time of life in the best of circumstances.  Many young adults with chronic mental or physical illnesses aren't diagnosed until the late teenage years.  Even if diagnosed as a child, learning to deal with these issues on your own is entirely different than when your parents or teachers were there to help you.

Think about a 10-year-old diagnosed with diabetes.  At first, his parents and teachers help with managing the disease.  So by the time he gets to college, he should have experience in watching what he eats, independently testing his blood glucose, and figuring out how much insulin to inject.  But in college he has to also be in charge of making sure he stays on top of ordering insulin; that he gets the supplies needed for testing and injections; that he knows what is going to be served at the cafeteria or an event so that he can bring something different if needed; and that he knows how to inform his teachers and other peers about what to do if he has an issue.  This is a lot to handle for someone who has already been dealing with it for years, but it's even more so for someone just diagnosed.

If you find out that you have a chronic condition that even doctors don't fully understand or can fix when you are a teen or young adult, it makes this already difficult time of life much, much harder to navigate.  This age group doesn't have the life experience to know how to navigate the medical system; in fact, many don't know how to make a doctor appointment on their own.  When you find out you have a life-long condition that is manageable once the right therapy is found (which could take months or years) but isn't curable, it makes getting a homework assignment done on time not as much of a priority.  Give this student a few years working with doctors and specialists and management might be a whole different story.

I know that you want to help all of the students you are teaching.  Please remember that these young adults deserve the same education that the others do, even if it takes more effort to give them that education.  Work with them within the limits of their accommodations.  Recognize how hard it is for them to make it to class at all, instead of looking down on them because they were late.  Make them feel comfortable about coming to you when they run into issues because of their diagnosed conditions.  Listen to their concerns about their grades and their later careers being affected by something they don't understand and can't fix.  Above all, trust, support, and validate that you realize that they are trying as hard as they can... just like everyone else.

Sincerely,
Just Another Mom of a Hardworking Young Adult with an Invisible Illness 

I read an article on "The Mighty", a digital health community created to empower and connect people facing health challenges and disabilities, about the big deal the press is making of Adele recently losing weight.  This article so affirmed ideas I have had for years but never thought could actually be true, because society and especially medical personnel, have been saying the opposite.

The article, titled "What to Remember Before Commenting on Adele's Weight Loss" (published mid-December 2019, written by Lexie Manion... https://themighty.com/2019/12/adele-weight-loss-christmas-photos/?utm_source=newsletter_mighty_brief&utm_medium=email&utm_campaign=newsletter_mighty_brief_2019-12-30&$deep_link=true has some amazing thoughts in it. But by far my favorite paragraph is this one:

"For those struggling with eating disorders and disordered eating, celebrating someone's weight loss uninvited can trigger dangerous behaviors in an attempt to lose more weight.  Some argue that by uplifting or just allowing fat people to exist we somehow promote obesity, which isn't true, yet no one talks about how we clearly promote self-harm through eating disorders and disordered eating when we carelessly celebrate someone's weight loss and nothing else.  It sends a dangerous message to people trying to recover from disordered eating and eating disorders that weight loss of every kind is an accomplishment."

I have been overweight by far the majority of my life - sometimes extremely, sometimes not as much, but I've never been what the charts say is a "healthy weight". Even the times in my life where I worked out every day or was on a strict diet, I never made it to that magic number.

But until very recently, my physical health has been pretty good - and what I've been dealing with health-wise has had no relation at all to my weight (except for Polycystic Ovarian Syndrome - PCOS - which actually could be a cause of my weight issues). Other than that, for years I've dealt with Restless Legs Syndrome and Mitral Valve Prolapse/dysautonomia, and just being a sickly child in general with many, many ear infections, kidney issues, etc as I grew up, plus a myriad of mental health issues.

I just crossed the line from pre-diabetic to having type 2, but it's still controlled by meds so it's really no different other than the terminology. I wasn't diagnosed as a pre-diabetic until just a couple of years ago. My cholesterol was a little bit high at my last check-up - the first time I've had an issue with it at all. My blood pressure has been slightly high the past few years but those years have been beyond stressful so how much of that was weight-related and how much was continuous, ongoing, major stress on top of an anxiety disorder and other mental health issues?

I have two clear memories of the medical field in relation to my weight and this issue - two extremes. One was a time that I knew I had an ear infection (I have had many so I knew that's what it was) and I needed to get antibiotics. I had new insurance and hadn't established a primary doctor yet, so I went to one of the few in the area that would take me without being established. He spent the entire visit lecturing me about my weight - and he didn't even look in my ears! That experience to this day makes me nervous about going to a new doctor and experiences like this have also scarred my daughter concerning the same issue.

The other time was just the opposite. I was severely depressed at this time of my life. This doctor mentioned at my visit that my weight was something that we needed to address, but not at that time. He was much more afraid that I would do something to hurt myself with my level of depression and he knew that adding on the stress of dealing with weight loss could send me over the edge. (He was very correct, by the way.) This was the first doctor I ever had who cared more about me than about my weight.

Since then the tide is slowly turning to where doctors don't blame weight for almost every physical problem out there. I have found a few doctors now that care more about me than my weight issue. But both my daughter and I both have dealt with this in the recent past so we know that thinking is still out there.

On a quick side note... for most of my life I would put off going to the doctor about anything, even an ear infection, because they made me weigh at each visit and all it did was throw me into a deep depression.  It has taken me years but I am finally at the point where I tell them I don't weigh - and the medical field is starting to listen.  I've had to argue with some to get to that point but now I don't let a scale keep me from having other medical issues addressed.

If you are in the same boat as I am about that issue, stand up for yourself. My point always was, if they can tell me a reason they need to have the number, I'll do it. So far no-one ever has. I can understand a child whose amount of medication is affected by his/her weight or a health issue that very directly involves weight gain or loss as a symptom, but not a freakin' ear infection!

Oh - and if they tell you that you don't have to look at the scale but they have to have that dang number, don't fall for it. One time I read over my post-visit notes after they had said that, and saw the number. I got so depressed I was down for weeks - all over that stupid number. Again, know that I've done it for years now and though sometimes I have to argue with them about it, I've always gotten the medical care I needed, even without that number on their charts.

Back to the main issue... I know my eating is a huge problem. I have said it before on this blog that I am to the point where I am terrified I won't ever be able to fix it - and those health and mobility issues that are just now showing up will get much worth over time. But it's truly ridiculous for a doctor to bring it up in an office visit where you went in the first place because you thought you had a virus. Do these doctors not think that we (those of us who are severely overweight) haven't already realized that it's an issue that needs to be addressed?

"The Mighty" author said it so well: "When we assume weight loss is a good thing without the person saying so themselves, we send the message that any lost weight is a win, when in fact, people can lose weight due to stress, illness, eating disorders, taking new medications and a multitude of other things.  This also sends a clear message to fat people that it's not OK to be fat, and that they should lose weight to fit in, too."

This happened to my boyfriend, though, because weight isn't a big issue to him, I doubt he even noticed. A couple of years ago he was in and out of hospitals for months, extremely ill, while several teams of doctors tried to figure out what was wrong. He was finally diagnosed with Stills Disease, a rare auto-immune disease similar to rheumatoid arthritis. Throughout the course of that horrible time, he lost about 45 pounds - and he's not a big guy to being with. When he was finally strong enough to be able to get out and do things, a friend of his complimented him on how great he looked.  

All I could think about was the absolutely nightmarish way he got there - and how I had begged him to eat and drink during that whole time because he was so weak. It tore me up inside and the one who said it is a big addiction recovery advocate.  Maybe he was just trying to think of something positive to say... but I really wish he would have emphasized how great it was that he was out of the hospital and on the road to getting better. If that same thing had happened to someone who was sensitive to eating issues, it could have spiraled them down to thinking that it was better to lose weight, no matter how you got there.

Sometimes I wonder about the future of medical science. I have already heard one TedTalk speaker say it (Peter Attia - "What if We are Wrong About Diabetes?"  https://www.youtube.com/watch?v=UMhLBPPtlrY )- and I know there are others who are starting to believe it, but what if... WHAT IF... the reason I am so overweight is due TO a medical issue, not the other way around? What if it doesn't have anything to do with my willpower or the fact that I don't exercise enough? What if, in fact, diabetes is part of this same underlying medical issue? What if no amount of willpower or dieting would change the basic underlying make-up of my chemistry and even if I lost weight, the other issues would still happen to me?

I know one result of this thought process... the shame at being overweight would be gone. The self-hate would be gone too, and so someone in my condition would actually care enough to tackle being as healthy as possible, instead of giving up because who wants to work that hard to help someone you hate?

I dream that one day this will no longer be an issue. In 150 years I hope that medical science will have come so far that they no longer blame the person for issues that are much, much deeper than something like willpower or being shamed into it fixing it (issues such as addiction, mental health, weight, etc). I hope that they look back at where we are now and think of this the same way we now wonder how the most enlightened 150 years ago believed that bloodletting was the best way to cure illness.

I still need to lose weight. I know I have an addiction to food and it's controlling my life.  I know that there are definitely health issues that are directly caused by my obesity. But people, especially those in the medical field, need to realize that weight loss is not the most important aspect of life.  After all, true health is the goal - not a number on a scale.