Sunday, August 20, 2017

Pariahs in Pain

Watching someone day in and day out who is in chronic pain (like my daughter is - fibromyalgia, stage III osteoarthritis, temporomandibular joint dysfunction, asthma, and chronic cluster vertebrobasilar migraines) can make a person question the purpose of pain and wish that pain didn't exist. 

However, as unpleasant as pain is, it serves an important purpose. Pain is the body's way of signaling the brain that there is a problem and that it needs attention. Without the ability to feel pain, one might get burnt (severely) without knowing it, or ignore a serious - perhaps life-threatening - condition (such as a heart problem or a severe infection in the body that could cause respiratory failure!)

Pain is intended to be an early-warning system that tells us that something needs our immediate attention. When we heed that warning, we can get help before a problem becomes worse, even fatal. When we ignore it, the pain continues and the problem can become much more serious. When pain is chronic, not only does the body suffer, but the mind does as well. Scientists have linked chronic pain to a host of mental illness, most notably depression (see this link to the Mayo Clinic).

When the cause of the pain is obvious, sufferers frequently receive empathy and understanding from those in the medical profession and among their friends and acquaintances. When the pain is hard to pinpoint, or there seems to be no physical reason for it, the empathy tends to fizzle, and judgment begins.  A prior physician firmly believed that our daughter's pain was a clear-cut case of malingering ... which means that he thought she was faking her pain to get benefits. Having lived with her all her life, we knew differently, but unfortunately, this is the reaction some people have to face things that they cannot explain away with pat answers or banish with pills. People want to be around beautiful, healthy people with no problems. They don't want to hear about the daily struggle of having to get out of bed and do things that they take for granted. They ask how you are, but they don't really want to know the truth; it's just a polite noise people make. Rare is the person who will stop and really want to know how you are. It's human nature to want to avoid unpleasant things. The sad side-effect of this is that those who suffer chronic pain or disease (especially if the disability is 'invisible') become the ones nobody wants to associate with, or pariahs. A pariah - for those who don't know - is an outcast, a non-person ... a social leper.

In the same way, those who suffer from chronic emotional pain can also end up becoming pariahs. Emotional pain is like physical pain. Its purpose is to alert us that something is wrong and needs attention. But our society is so performance-oriented and perfectionistic that often, these early warning signs get ignored and the pain goes underground ... only to resurface in areas we weren't expecting.  

Photo "Lonely Woman On
The Beach"
by Sira Anamwong

Nobody wants to be around someone who is sad or angry, and so we sufferers put on a mask, pretend, and ignore the pain. If folks were more accepting, and more approachable, we might feel more free about being honest about how we feel. But we've learned that the reaction of a great many people is one of condemnation. Sadly, folks seem to only want to know about our pain AFTER it is done and we have dealt with it and moved on, or overcome it. Perhaps if we had just dealt with it and discovered why we were in emotional pain and start to look after ourselves in those areas, the pain might not be there or be as intense. 

Yet by the time it becomes chronic, ignoring those early messages of emotional pain has made us numb to them. The saddest part is that the numbing also numbs the happier, more pleasant emotions as well; our emotional centre can't tell the difference between "good" and "bad" emotions - they're just emotions. So to protect itself, it shuts them ALL down.  The only ones that tend to get through now are the stronger, more violent emotions - like anger, fear, and sadness. Peace and joy and love get suppressed, or worse yet, warped by being filtered through the anger, fear and sadness.

Enter chronic depression, anxiety, and/or post-traumatic stress, depending on the circumstances that led to our pain. Wow. Talk about being a pariah? NOW we're in for it. As intolerant a some folks can be of unexplained physical pain, they seem to be doubly intolerant of emotional pain. This attitude of intolerance is toxic to us. So we withdraw. We isolate. And that just cements their opinion that we aren't worth the effort. They move on to more pleasant encounters. And we get left behind. 

I identify with those in pain because I am in pain. My disabilities are invisible - and sometimes I feel like I am invisible too. All of society seems hell-bent on criticizing and condemning things about me that I consider strengths: my introversion, my sensitivity, my empathy, and the list goes on. I've battled these prejudices all of my life.  And now, because of my invisible ailments like multiple chemical sensitivities, degenerative disc disease, and the like, I find that I am just another pariah in pain. I feel as though I have to explain over and over again why I can't go to events that "everyone" is going to. People assume that I'm antisocial, when truth be told, I just don't want to have to battle invisible clouds that mean nothing to people who aren't affected by artificial scent. Or, I don't want to stand on cement floors and ache for the next three days.  Little matter the reasons. It's part and parcel of the kind of "if you are not like us in every way, then you are not one of us" reasoning. (Don't get me started on that one.)

What am I saying? 

It's okay to hurt, if you hurt. Pain is not a bad thing. It's unpleasant, to be sure, but it is not bad in and of itself.  It is a signal that something is amiss somewhere, and the sooner we pay attention to that, and get help, the better off we are. But just because someone suffers (physical or emotional) pain on a regular basis, that doesn't make them evil or to be avoided or judged.  It makes them in need of understanding, compassion, and acceptance.

Acceptance is key. I wish we all were better at it, but it's not something that comes naturally; we have to work at it. But I figure, until more people are willing to come forward, like I just did, and talk about it, we'll just keep on being pariahs in pain.

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