November 01, 2018

Eating Disorder Recovery: Nobody Signs Your Cast – Chris A.

call to change mental illness stigma“Hi! How are you doing?” my orthopedic surgeon asked, as she entered the exam room.

It was my two-month follow-up appointment following foot and ankle tendon reconstruction surgery. My post-surgical recovery had plateaued. I was tripping over my right foot since it toed in and I walked on the outer edge of it. The tendons that manipulate my foot were malfunctioning — visible even to me. I had also tripped over a vacuum hose at the car wash and was pretty sure I blew out some ligaments that were replaced during the last surgery.

“Great!” I replied, with a big smile on my face.

“No, you’re not! You’re wearing your boot,” she retorted.

I could not argue with that. However, I did feel great and was in a very positive place — both at that moment and in life in general. The prospect of a fifth surgery on my foot and ankle did not phase me. I had survived much worse. This surgery would merely be an inconvenience that I would need to plan around.

You see, I have been dealing with mental health issues (real or imagined by my abusers) since I was four years old. I have been at war with mental illnesses I should never have contracted in the first place — virtually all my life — and I had won against an enemy that many highly-educated people thought was impossible to defeat! I had recently won my battles with anorexia nervosa and post-traumatic stress disorder. I was in the process of weaning off my last psychotropic medication under the care of my doctor. I live a happy and healthy life today, and it is one that I never take for granted.

Yet, no one would sign a cast for those illnesses. There would be no visible wound.

However, people would, for once, care that I was having major surgery this time. They would be able to see the cast. And, this surgery was a major surgery; my heel would be cut in half and moved. Ligaments and tendons would be reconstructed. I planned to get a hot pink cast (I like to make statements), and perhaps my friends would even sign the cast. My wife would have help with our meals and with the kids in the first days and weeks after surgery. In a strange way, I was even a little bit excited to finally be cared for by friends and by people from my Synagogue for once in my life.

My upcoming surgery would garner sympathy from friends and family, but my internal suffering — that was much more debilitating — garnered no sympathy or support. 

Mental health recovery: a lonely and invisible task

People have a lot to say when it comes to healing from an illness. As an example, let’s say that you were receiving cancer treatment. Your friends, neighbors, and relatives would bring you meals in the beginning.

People would encourage you, comment on how strong you are or how you are going to beat the illness. You would receive cards and notes of encouragement. Your friends may even set up a GoFundMe page for you and promote it to help raise funds to defray medical costs. They would be happy to help you and you would be thankful.

And this is what makes me livid: mental health recovery is every bit as tough as recovering from cancer— except that nobody brings your family food. You will not get cards in the mail. People will not tell you just how strong you are – quite the opposite. Even if your friends set up a GoFundMe page, few (if any) people will donate to it. Your boss will not understand why you want time off of work to deal with an unseen illness.

When I was about to go into what many would consider to be the equivalent of major surgery for anorexia nervosa treatment, I was told to “toughen up and get over it.” I was asked, “why can’t you just eat?” Several of my friends at the time told me that I needed to get my s*#t together because I had a family to think about and I was irresponsible. Of course, that makes one feel worse about an already debilitating condition. Words like this can have a direct impact on one’s ability to recover. 

Imagine if you had a broken leg and your well-meaning friend hit it with a bat. That is essentially what happens in early recovery when your friend or loved one tells you to work harder or to stop being sick.

Nobody signs your cast.

The figurative 800-pound gorilla is literally crushing you

Have you ever had the proverbial monkey on your back that is bothering you and that you cannot get rid of? How about carrying the figurative 800-pound gorilla on your back that you cannot tell anyone about — for fear of judgment, rejection, and ostracism? The thing about mental health recovery is that nobody can see that you have a life-threatening illness, but you are suffering immensely – more often than not in silence. 

In the case of depression, it can be a significant struggle to get any work done – and people think you are lazy. Morning after morning, I dragged myself out of bed wishing I had died in my sleep. I wondered why my existence even mattered. I felt worthless in the context of whatever I was doing – even if I was really good at it. I was quite sure that my passing would go mostly unnoticed. 

Post-traumatic stress disorder had me in a constant state of hypervigilance. Trust was something for other people. Nightmares kept me up and flashbacks to horrible events happened multiple times a day, every day. I could not have a single day where the events of the past were not invading my life. Death, even by my own hand, seemed better than this existence. If only I could make it look like an accident, I thought, so my family might not suffer as much with my passing. 

Then there is anorexia nervosa. I found myself putting all my pain onto my body. The only thing I felt like I had control over was how much I ate and how I could change the shape of my body. My mind was continually tormenting me with negative body image thoughts. It told me I needed to work harder at being a good anorexic, and that no matter how hard I worked for “Ed,”* it was not good enough. My eating disorder told me that I was ugly and fat and a slob. My body dysmorphia literally made my body appear much bigger to me than it actually was.

How was I supposed to go to a very demanding job with all of this going on? Well, I had to. Nobody wanted to hear about my pain and suffering at work, much less do small things (e.g. give me extra time to complete work) to support me in my recovery. I was expected to walk with a broken leg and no crutches. If I could not work on a given day because the pain was too much, or if I was unable to think at all, I was questioned as to why I needed the time off. My reason would never be “sufficient,” so I learned to give vague answers to Human Resources that left my supervisors wondering — and scratching my name off of the list of people up for promotion.

Nobody signs your cast.

Mental health recovery: not for the faint of heart

My therapist once told me that only the strong survive mental illnesses. I am a resilient and mentally tough person, and yet there were several times that I almost did not survive my illnesses. Why? 
  • Mental illnesses redefine and distort your very reality, yet recovery is something that you, as the sick person, have to do for yourself. You have to reach out to the doctors and therapists.
  • It is often hard to find or afford the specialists you need to help you heal. Most of the best therapists and specialists do not accept insurance. 
  • You have to work hard to strengthen and retrain your brain (much like physical therapy) so that it will function the way it is supposed to. 
Many people unable to afford treatment will become homeless or incarcerated for non-violent offenses or alcohol-related offenses.

The road to mental health recovery is long and it is tough to predict when life will get better. There are no blood tests that tell you how your illness is progressing or healing. Death is often sudden and unexpected, except in the most chronic of cases. The vast majority of people do not care, or, if they do care, they likely do not understand. The stigma surrounding mental illnesses cause others to be resistant to learning more about these diseases.

Guess what else? As someone with one of these diseases, you get to fight your heart and brain out for recovery, while society is tossing one obstacle after another in your path. These are obstacles like shame, silence, marginalization, ostracization, refusal to have a conversation about it and refusal to learn and understand these diseases with an open heart and mind. Tough luck, pal.

Nobody signs your cast.

Sign my damn cast already!

You know what I want? I want the general public to have the intelligence and the courage to donate to organizations like the National Alliance on Mental Illness (NAMI), National Institute for Mental Health (NIMH), or the National Eating Disorders Association (NEDA). If research on mental illness was on par with diseases like cancer and heart disease, we would have better treatments that significantly improve patient outcomes. We would have community mental health centers that could afford to provide top-quality care to those with chronic mental illnesses. We could have dedicated mental health sections of Emergency Departments that treat mental health emergencies without the use of locked rooms with cameras and burly guards and police officers – all inhumane things that make an acute mental health emergency worse. We could educate the public so that we can have the opportunity to treat mental illness before it becomes a crisis.

I want the general public to acknowledge their own suffering from mental illness – and to stop living in denial. According to the National Alliance on Mental Illness, 43.8 million Americans (1 in 5) experience mental illness in a given year. Sixty-percent of those that have a mental illness will not get treatment for it. Your brothers and sisters in this country should not be ashamed to seek treatment because you were scared, refused to stand with them, and ostracized them for contracting diseases through no fault of their own.

Lastly, I want the general public to treat people with mental illness the same as those with a physical disease like cancer or a broken leg. Treat these people with the dignity and respect that they deserve. Do not count their illnesses as a strike against them. Show them compassion and understanding. The vast majority of those living with mental illnesses are not the cause of violence and mass shootings in this country. We must recognize that people commit extreme acts of violence without being mentally ill. Mental illness alone is not a predictor of violence.

Just like with cancer or heart disease, you never know when mental illness will strike you or your family. When that happens, you will need that same compassion and support that you may not have given to those currently struggling with these awful and deadly diseases.

Will you please sign my cast and not ignore or reject my suffering?

*Ed is an acronym for eating disorder; many in the eating disorder recovery community refer to their eating disorders as “Ed.”

Chris lives in Colorado with his family. An avid learner and science nerd, he loves to read about topics of interest and share them with his wife, who listens patiently. In his spare time (what’s that?), he likes to hunt, fish, hike, fly airplanes, travel, and scuba dive. He serves on Eating Recovery Center’s Recovery Ambassador Council, in order to give others hope that recovery and a great life after illness are possible.
 
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