Monday, 31 August 2015

The Lie of Giving Up and Falling Apart.



"Giving up is easy" says the meme up above.

"Falling apart" is bad.

"True strength" is only when you don't give up or fall apart.

This is a clear and persistent belief in our society.

Having fallen apart on more than one occasion I am clearly weak. I have failed the true strength test.

And yet here I am still kicking on. Loser that I am.

I understand why people post memes like this. I understand that for some they are indeed inspirational. But the simplistic inspirational narrative in these kind of memes irritate the hell out of me.

What exactly is wrong with falling apart? And what exactly constitutes falling apart?

There are times in life that things reach crisis point and you fall apart. You can't cope. You cry and withdraw. Shake your fists at the sky and scream about the injustice of life. There are times when it feels like the tide of human existence is going to swamp you and all you can do is feel despair. You aren't falling apart you are experiencing real emotions and behavioural reactions to a stressful life.

When I see memes like the one above I think of the countless emails I receive from fellow patients who are overwhelmed not only by their physical symptoms and social and psychological stressors associated with that, but also the overwhelming sense that they are failing or doing illness wrong because they can't hold it together.

Illness is stress. Chronic illness often means that stress will never fully go away. People aren't falling apart when their stress levels reach critical levels. They aren't giving up when they voice that stress and can't hold it all together. They are human beings, experiencing real and valid emotions to a prolonged highly stressful situation. We should not be jumping on them with judgements about giving up and the evil of falling apart, but offering them support, a place to voice their fears and sadness, and direction to appropriate mental health groups to help them navigate the complex and stressful world of chronic illness.

Should we add yet another burden to the list, pretend it's all okay and hold it all together, at least in the public view?

As  I've written many times on this blog, giving voice to the negative aspects of illness, not coping every second of every day, and admitting you are overwhelmed is not giving up. In a way it requires far more courage to admit the truth of falling apart in face of a society that values the perfect presentation of a person with illness who always "holds it together."

Inspirational sick person narratives are rife.

Flawed, complex sick person narratives are jumped on and wiped away with relentless regularity.

Admit a flaw and you are giving up.

Admit that it's hard and you are giving up.

Admit you can't hold it all together all the time and you are giving up.

Giving up by admitting it's hard and it falls apart, isn't the easy option. A false face is the easy option. No one questions the perpetually,perky smile, I've got it all under control, narrative, because that's what the world wants to hear. To salve their own fears. Sometimes to salve our own.

If we truly want to promote mental health we need to move away from judgemental narratives about giving up and that falling apart is the worst thing you can do. If we want people to seek help we must be open about the times it all comes crashing down, and that we don't actually have to be the popular version of strong ALL the time.

I've fallen apart many times in my life, not just in the last nine years of illness. Because I am human, not some super woman. I have strength. A strength which is true to me, even if others can't see it.

And for every single person who sends me emails, or is sitting at home right now reading this who feels like they are falling apart, or are afraid others will judge them if they voice their struggle, please know you aren't abnormal, you aren't doing illness wrong, you are stuck in a shitty and incredible hard and stressful situation right now and responding in a totally human way, but there is help available and there are others out here in the ether who get it and understand.

There is strength in giving voice to the struggle.

Screw the lie of giving up and falling apart.

You are not alone.

Michelle

It's okay to ask for help.

Here are some starter services in Australia. Most countries will have similar programs.

Australian Psychological Society (has a find a psychologist function)
Kids Helpline
Headspace
Lifeline
Beyond Blue

Suicide Line

This may be one of my favourite First Aid Kit lines:

I always thought you'd be here

But shit gets fucked up and people just disappear

In the case of chronic illness shit gets fucked up and life is hard. We don't have to pretend it's all sunshine and lollipops. 


9 comments:

  1. I just made the error of posting a comment on a meme that says "When diet is wrong medicine is of no use. When diet is correct medicine is of no need." I pointed out that a person can eat an organic healthy diet and still get cancer and that I've yet to find any specific food that will force my ANS to work properly. It's almost like shaming someone for getting cancer or some other health malady. We must have done something to deserve this or we could have done something to prevent it.

    If only life were so simple. If only I could hold it all in and not fall apart. If only I didn't absolutely have to give up sometimes. If only people could get past their own damn fear of their mortality to just be present with others in their struggles. If only...

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    1. My grandfather was one of the original health food nuts starting in the 50s. His particular health food interest was "roughage" or as we call it now, fiber. Always eating the fiber. Ate brown bread, apple cores, oatmeal, bran, all for the fiber. Yet, he died at 74 from colon cancer. The very disease for which his diet and lifestyle is now promoted as the best prevention and cure.

      You'd think having experienced his death in my teens, I would have grasped early the disconnect between food/lifestyle and disease and that I would never have fallen for the media/medical hype surrounding dietary fixes that developed shortly thereafter. But, nope, I spent the next 30yrs of my life chasing the healthiest diet, the diet that would fix my health problems no one would recognize, the cleanest and most righteous diet that would save my soul (I mean, body).

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  2. I will always be grateful to you for introducing me to First Aid Kit. What an aptly named group!
    Yep, shit does get fucked up.
    You are an excellent human being, who does the good the bad the indifferent with authenticity and gusto. I love your words and I love that you make a space for us to feel okay about the realities. Sometimes, it just sucks.
    x

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  3. Thank you. What you write helps so much. Much more than you know.

    But then again, you *do* know. You really know - what you write proves it. What you are living proves it.

    Which is why you write what's real, and you aren't full of crap.

    Everything you said about this meme was right. Also struck me: that part about how everyone else would understand if you fell apart? Oh, no. No they wouldn't. That's exactly what's not allowed.

    Keep up the facade. Repeat. Repeat. Repeat.

    I agree, Rachel, "authenticity and gusto." That's exactly what I find here.

    Thanks again. Twelve years into the hell of incurable illness, and I don't find many places like this one.

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  4. Thanks for this, it was really helpful to read for me at the moment--I have been falling apart a bit lately, and it is made all the harder by getting annoyed at myself for not being tougher, and comparing myself to others who appear to be coping with tough things better than I am. And most people I try to talk to about it just tell me to 'be positive' yadda yadda, or just change the subject, when all I really want is for someone to just listen to me and acknowledge how shitty and hard my situation has been lately (CFS diagnosis and suspected dysautonomia). I don't expect them to solve it. Trying to talk about it is not wallowing in it, which is what some people seem to think--it's just trying to talk about it! The rug has been completely pulled out from under me, I'm facing complete uncertainty about how long I will be sick for, and yet somehow I'm supposed to just remain chirpy about it? Or to not talk about it, because it depresses other people? To me, that seems delusional. If I was going through something else tough, I feel I wouldn't be judged as harshly as I am for finding it somewhat tough to deal with these weird, uncertain invisible illnesses.

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  5. Thank you for writing this.

    I collapsed with sudden onset M.E. I was a professor of history. I could not read my own lecture notes. I could not get complete sentences out of my mouth. When students talked to me, I couldn't understand what they said. It was all terrifying (and, of course, exhausting - I did nothing on the days I didn't have to be lecturing - stayed in bed, but it didn't help).

    I didn't actually quit teaching - my chair called and said they were all worried about me, and that I was to stay home the next semester and get better. [a shock to all of us that i did not get better ... rather, over the next four years, I got worse.]

    I can't tell you how many people wrote to me, "I couldn't quit work because I needed the paycheck." That "quitting work" was "giving up." Hello? That's what it means to be disabled. That's what it means to be an invalid. It is not a choice. You CAN'T work.

    I had to quit driving soon after because I had a blackout and woke up with the car on top of a low stone fence in front of the post office. I couldn't read a comic strip without getting confused. My daughter had to fasten me in the seat belt because I couldn't figure out what it was for. i had intense pain in the back of my neck and behind my eyes 24/7, and I got really bad headaches. I poured an entire pot of coffee into a silverware drawer convinced it was a cup. Over the next four years, despite remaining in bed most of the time, I kept deteriorating. finally I was so sick I couldn't even brush my own teeth, and except for getting up to go to the bathroom (which took a lot of willpower and a lot of time), I was bedridden. None of that was voluntary. How in heck was I supposed to work?

    Meaning to be kind, people suggested i work from home - teach online. I couldn't do that either. I wasn't any more coherent at home. When I meant to ask my daughter how she was coming on solving a puzzle, I said, "How's the tablecloth coming along?" She said, "tablecloth?" So I said, "How's the map coming along?" Map? It's a puzzle, Mom. [Right category, wrong word.] I put milk in the microwave and cereal in the refrigerator. I tried to stuff a roll of paper towels into the Mr. Coffee machine. How on earth could I have taught from home? It was hard enough work trying to just make it through the day.

    And I WANTED to work - I LOVED being a historian. I had worked hard to BE a historian. It really hurt when I finally realized I was not going back at all. That my career was over at the age of 44.

    The people who say to me - "I'd quit work too if I could" - as if I had a choice; or "if you just ate right, you'd be fine" - I think that's a magical mantra they say to keep us at a distance because the thought of ending up like us is terrifying to a generation that really hasn't seen much sickness in working-age people. They wear their yoga outfits and diet like a talisman. It's a superstition, really. Like that stupid fad for saying "If you think happy thoughts you won't die of cancer." It's a way of saying - I'm not you. I'll never be like you. There are things I can do that will keep me from being like you. It is a way to distance yourself from fear.

    Because I was scary. The thought of being me was very scary. They had to have reasons in their heads that this could never happen to THEM. I must have done something wrong.

    But these people are getting older, and one day, they're going to get sick. Heaven help them when they do.

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  6. Relentless stress (known otherwise as life) is bad for you.

    It is made worse by people trying to cheer you out of real problems. Of course, then they don't have to help.

    Do the best you can - consider it a success - and stay away from toxic people (and toxic doctors). Don't let illness take anything it doesn't absolutely have to from you.

    Good post.

    Alicia

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  7. I just watched the movie 'Cake' with Jennifer Anniston. Was blown away by the insightful take on living with Chronic Pain. Until the last moment, when she seemed to have an attitude adjustment and suddenly sat up straight - As though, 'Determination' overcame pain. It pissed me off royally. The character had been developing insight in the second half of the movie and this was shown in her more thoughtful actions towards other people. And that should have been enough. But no. In the end she had to 'overcome' in that seemingly mind over matter way.

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx