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What 'Hoarding: Buried Alive' Got Wrong About Chronic Fatigue Syndrome

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Today I was watching a YouTube video entitled “Hoarding Buried Alive: Worst I’ve Ever Seen.”

I usually don’t watch these types of videos. I watch the first five to seven minutes and click on to something else. However, there was one scene in this episode that really grabbed my attention. And it made me sad, then very angry.

The intention of a reality show such as this is to elicit a certain reaction in the viewer — to be shocked and disgusted. I was disgusted, but for a very different reason than you might think.

The narrator introduced 51-year-old Teresa as a person who found pleasure in finding unique items at thrift stores. She went to certain locations so often that they knew her by name. She expressed genuine happiness when talking about it, and liked being around friendly, non-judgmental, familiar people.

She holds up a picture in a store that says, “Housework won’t kill you, but why take a chance?”

Ominous, foreboding music starts. The next few scenes feature several shots of her cluttered, out-of-control living space. Cluttered by 15 years of hoarding the items purchased at thrift stores. Teresa lives at home and is alone most of the time, “left to her own devices,” as her children are grown and her husband is gone most of the time due to work.

One of her grown children is interviewed on set. “I don’t understand my mom’s choices. I don’t know who she turned into, but she’s not my mom.”

And the child was right. Her mother changed. But why?

At this point, the viewer is likely feeling sorry for Teresa’s cat, children, and grandchildren. They can’t visit as often. They can’t see their mother and grandmother because they don’t like the cluttered house. It seems to be all about the emotions and the inconveniences felt by those around Teresa.

Another of Teresa’s daughters talks about not being able to come home and languishes over what used to be her childhood bedroom. She, experiencing difficulties in her own life, expects her mother to prepare a space for her so she could come and live with her.

So far, Teresa is portrayed as a lazy, inconsiderate, selfish person who wastes money on “things” and prioritizes those things over her family members. What a disgusting human being. Isn’t that the message here?

Teresa says, “If I don’t get my house cleaned up, I fear that I may push my family away and lose them.” Then there is a cut to a commercial break. Not once in this introduction is the viewer led to feel empathy for Teresa. Not once in this introduction does the show explain why Teresa is the way she is. To me, it seemed to be just a lot of “let’s make Teresa look and feel as guilty as possible.”

After the commercial, “51-year-old hoarder” Teresa is shown in her cluttered kitchen trying her best to do the dishes, saying, “It takes 10 times longer to do something as simple as the dishes.” She goes on to say “I just get discouraged. A lot of times, I just give up.”

Why would she say that? Maybe because she’s just lazy, a viewer might think. Maybe she needs to lose weight. Maybe she just needs to start going for walks and taking more vitamins and eating healthier. Simple, right?

Finally, we get some background. Fifteen years ago, Teresa fell ill, forcing her to quit a job she loved: being a pediatric nurse. The diagnosis? Chronic fatigue syndrome. And that was all that was said. Nothing was said about how devastating the illness was to Teresa. How it likely shattered her world into a thousand pieces. What it did to her ability to be independent and make a living doing something that she really loved to do. Having everything in her life that she loved and knew taken away from her, she was powerless. And everything screeched to a halt.

“It’s like everything would drain out of me,” she said. “I would be in bed for six, seven, eight, nine weeks. The diagnosis that they came up with then was chronic fatigue.” Nothing more was said about her illness.

I don’t recall the show talking about how the family got together and helped Teresa out. I don’t recall the narrator speaking about how the family understood that Teresa had a serious illness and how they came together to help her. No. She seemed to be left to her own devices. Alone with an illness with no cure in sight.

How could she possibly have had the energy to clean a large house that was once immaculate? How would she have the energy to organize what she purchased from the thrift stores?

And the children and grandchildren were portrayed first as the victims. In my opinion, Teresa was not portrayed as a person who did the best she could with what she was suddenly handed.

Immediately I could relate. I myself used to be a neonatal nurse and had to quit because of mental health issues secondary to my chronic fatigue syndrome.

Of course, my employer never knew that. They only knew me as a cheery, good employee who didn’t cause trouble. They thought I quit because I found another job. I was too ashamed to say “I’m too tired to come into work. I need to quit.” I was wracked with shame, guilt, and constantly berated myself for feeling like a lazy failure.

I was also suicidal. Devastated that I couldn’t live a normal life, I had attempted suicide. This would be my seventh suicide attempt since the year 1990.

And I hid what was really wrong because I knew I would not be understood. If I had shared, I’d get that all-too-familiar response: “Oh, we all get tired from time to time.”

A response like this, to me, means “Your illness is not serious. Your feelings don’t matter. In fact, you don’t matter.”

I believe that there are millions more missing. Those people who don’t have support systems.

People who don’t have sympathetic partners or spouses. People who do not have champions and ambassadors writing articles and making movies about them. People who do not have educated caregivers.

People who are crushed daily by cruelty and apathy. People who were raised to be perfect in every single way or the consequences would be dire. People who are considered to be “problematic” by their uninformed friends and family.

These are the people who stand alone on small islands, not knowing how to cope. People who may turn to food or alcohol or shopping for comfort. Then these people are demonized.

Some people live with an axe hovering over their heads, ready to strike should they fail.

People like me.

I am allowed to watch a show about a misunderstood CFS patient and be furious. I am allowed to be angry with society’s cookie-cutter expectations of women.

Anger has fueled my efforts to be normal, fit in, and to try to continue to work. I don’t have the luxury of being surrounded by sympathetic, nurturing people. And I am allowed to be jealous of those who have that luxury.

And my anger will continue to fuel me and drive me to make both good and questionable life choices. Because I have been, at the end of the day, left to my own devices.

I can feel these feelings for awhile, but at some point, I must let the anger subside.

I deserve sympathy and respect for having made it this far.

And so does Teresa.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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Originally published: May 18, 2017
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