chronic illness chronic pain stigma Uncategorized

People never see the worst

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I often wonder what people think about my bad days. When I cannot leave the house. When I cannot work. I get this impression from my workplace they think it is all fun and games for me. That I am just hanging out a home chilling.

I wish people could see being closed doors.

First, in ‘Society’ on those moderate days or even rough days we lie a lot. We ‘I’m fine’ we have a public ‘facade’. We present ourselves in a certain way, especially at work. To make it easier on ourselves and definitely to make it easier on others.

But they don’t know that. It is like they think on those day, those publicly presentable days, of our stoic pain face we are ‘all good’. When in fact we may be quite the opposite. We are just that good lying with our faces and our body language because pain and illness is our Lifestyle. You get used to the game fast. Get sick of the platitudes and fake sympathy… even the real sympathy. And you want to trick your brain into functioning so you plaster on a facade and get your ‘game face on’. We all do it, in different ways. And we all falter when we feel worse in various ways.

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There are reasons for our social lies. And they help us cope. But they do not, unfortunately, help with awareness. Sometimes I feel like being blunt and just telling it like it IS. Straight how I feel. But even I don’t like the realness of it when I am trying to cope through work. And I know people don’t actually care.

So I don’t.

And then comes a Bad Day. A day that is beyond my capacity to cope through. There is Tolerable and there is Intolerable. There is Functional and there is Non-functional. You can put a number to it all you want but that is the straight up divide. Pain. Symptoms. You name it. A Bad Day can cripple you.

And if you are not working or off then take that day for self-care. And do not feel guilty about it because that is what we should do. Take care of self first. Manage the symptoms. Rest. Mange the emotions. Do what you can to get through it.

When it is a work day…. there is never an easy answer. When I call in sick, which I cannot do much of. Not for all the Bad Days lately. They call me back wanting me to come in. So I feel obliged. I feel guilty. I feel horrible. I feel like they think I am lying.

And I wish they could see behind closed doors.

 

Wiped out for the pain. Unable to move. Laid out. Moving causing spikes of agony that shoot through the skull when you run to the bathroom because you must.

Vomiting from the nausea.

Dizzy and the shakes from severe IBS bouts of diarrhea trigger by the migraine.

Vertigo spins from the migraine? From the dehydration? The blood pressure drop? Who even knows at that point.

Muffled hearing and tinnitus in one ear.

Neck pain from the migraine, making it difficult to rotate.

FM flare from lying down too long in one spot

Feeling spacey and out of sorts from the migraine, dehydration and low blood pressure. It is hard to even understand things. Confusion.

Wishing I could go to the ER, knowing it would be pointless.

 

They don’t see that. And they want me to come in after a few hours. Feeling crappy about not going in in the first place, and guilty and a failure. I do. I load up with meds. Even ones for diarrhea and am not supposed to take that will stop the bout but will give me severe craps because how the hell else am I to drive anywhere and do anything like that. Take more than the recommended anti-nausea pills. End up throwing up at work usually 2 times is my usual amount. Take a Gatorade on the way for dehydration. Can’t do anything for the 9 pain… so that is that hell I have to figure out how to mimic a functioning person through.

If they just believed that when I say I cannot come in… there is a valid reason for it. I feel like I shouldn’t even be on the road when they call me in like that. But I don’t want to lose my job either.

Fact is no one gets to see what we are like behind closed doors. No one gets to see us at our worst. They only see the ‘Society’ facade and stoic face and functional and tolerable. In our non-functional and intolerable we are generally at home or the ER. No one sees that level of hell we go though.

Here is the lesson. No one sees us at our worst. And no one sees the real us at our moderate to not too bad. So they doubt the worst.

 

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6 comments

  1. I have severe RA and your words are my words and a voice that I fear to express. Reading the blog refreshes me that feeling like cotton with a plastic bag over your mind is not unique to me.
    #ChronicPain usually has an audience of one. Your words can rally another into self-awareness and hopefully moving forward as best we can. Thanks Dr. Dorrie Cooper

    Like

    1. Yes we all must move forward as best we can. There is always a sort of friction with coping. Between the struggle with the pain and the acceptance we gather over time. Yet, we never give ourselves enough credit for the strategies we do develop for coping and the progress we do make.

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    1. It is horrible to feel guilty about being non-functional from pain. Horrible to have to function with pain at all to be honest. This post stems from that built up frustration of trying to cope with that which seems impossible to do.

      Like

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