September 13, 2016

This is where we go wrong with how we treat people with Chronic Illness.

Chronic Pain Soldiers: I Salute You!

As someone who lives with a chronic and invisible illness, I often find that the hardest things to deal with are the reactions of the people around me. Not just those close to me, but even random strangers.

There are people who are completely supportive and understanding. Then there are the ones that are judgmental and give me the silent once over, looking me up and down quickly, calculating what they see in an instant.

What they see, is a woman who doesn’t “look” sick. A woman who has mastered the art of smiling even though the tears are lined up just behind the barrier of her eyelids. A woman who has learned that most people don’t really want to know the truth when they ask, “How are you?”

There are many aspects to living with chronic pain or a chronic illness. Being someone who makes it a point to find the positive in every negative, I can be grateful for the strength that I have found within myself. I can be thankful for having developed the spirit of a warrior.

Even on my worst days, I am fully aware that there are countless others who suffer more than I do. I am always aware of all of the ways that my condition could be worse.

We can never really measure the degree of someone else’s discomfort. When did our society decide that someone else should have the power to say that one person is suffering more than another person? Considering that each person is individual and that pain is relative, why do they put that power in the hands of someone who may have just met us?

Two people with identical afflictions could be sitting side by side with the exact same level of pain—but those same people will describe the sensations differently and place their pain at different numbers on the pain scale. Pain is relative. It will vary based on one’s ability to tolerate it—each sufferer with a different threshold. Their coping mechanisms will also play a significant role. Not everyone curls up into the fetal position and sobs while in severe pain. Some people, like myself, use inappropriate humor to cope. I am the person who giggled through childbirth and made jokes even though that’s not how I felt on the inside.

Socially, we are trained from a young age to be polite and respond kindly when asked how we are doing. We are trained to not talk too much, to pay attention to the silent signals that people give us when they’re not interested in what we’re saying and to respect their discomfort more than our own. We are taught that being too descriptive is exaggerating. Taught that talking too much about our pain will make others think we just want pity, instead of seeing that we just want to offer information and awareness about our condition.

We are taught that pity is a bad thing rather than likening it to sympathy/empathy. Somewhere along the line, it became improper to accept pity as a show of support or love and that “pity parties” make us weak. While I don’t encourage wallowing in self pity for too long, I do question why it’s viewed as a weakness to take a moment to truly feel whatever it is that we’re going through and maybe indulge in a good cry. Why are we taught to pick ourselves up by the bootstraps or to cowboy/cowgirl up instead of being taught that allowing ourselves to feel requires strength in itself?

In my experience, I have found much more strength in the moments that I’m in a trembling heap on the bathroom floor than in moments that I plaster a fake smile across my face. Allowing myself to fully feel that tsunami of sensations and emotions—and then fighting my way back to the surface—requires much more strength than the mask I find myself wearing. That crashing wave is much heavier than a thinly veiled expression or courteous, “I’m fine, thanks.”

When and why did it become more socially acceptable to offer an empty “I’m sorry,” than to offer a genuine touch, a hug, a listening ear? How do those of us who suffer bring knowledge and awareness to others if it is frowned upon to openly discuss our ailments with those around us? Why is that commonly viewed as complaining or wanting pity? Furthermore, why is it not realized that people can be strong and filled with positive thinking and still “complain” about things that hurt?

Having the burden of societal training upon our shoulders can often be harder to carry than the illness itself. It can leave the sufferer to feel as if they have to live multiple lives in order to satisfy the comfort of everyone else. There is the life we really live inside our minds and, when alone, the one that acknowledges the pain. There is the life we live with our spouses or partners—the one that reminds us not to complain too much so that we don’t make them uncomfortable.

There is the life we live when in the company of friends or loved ones—the one that requires us to wear the happy mask and politely answer, “I’m great, thanks,” instead of letting them see how we really feel. There is the life we live in the presence of strangers—the one that makes us lie and say, “I work from home,” instead of, “I don’t work right now because I am disabled.” We do this because the truth would make them either squirm in discomfort or size us up with “the look.”

When did acknowledging a disability become something to be ashamed of? Why do we feel shame in admitting that we can’t do this or that? Why are we embarrassed? Why do we feel guilty over something we cannot control?

I wish that I could go back to the place in time where these things were taught. I wish I could shake them awake and make them realize the damage they would do to countless people throughout the ages by making them feel that an ailment should be hidden, that a bruise should be covered and that a scar is ugly.

Instead, I would like to teach society that those of us who live with daily pain or illness are the ones who can offer true knowledge on strength, survival and how to win a battle. We are the invisible warriors in this world. We are not to be shamed or viewed as the weakest links. We carry the weight of creating our own comfort as well as yours. We are the shape-shifters—we adapt—we choose our words to suit others, our masks to blend into any variety of social situations. We carry on with caring for families and jobs, fighting through daily and hourly pain in order to complete tasks that the world requires of us.

When a soldier is wounded in battle, he is pulled from the field and lifted up in pride for what he or she has given or sacrificed, for what they have endured. This is how it should be, for they have given much!

But for the invisible warriors in this world—those who soldier on every day through daily battles—we cannot take ourselves off of the battlefield of life. Day after day, we continue to fight while wounded. We fight ourselves, our loved ones, society, the medical professionals—and we often do this with a smile. We are not the weakest links. We are pure strength. Titanium.

It is not pity that we seek. It is not empty apologies for things that you can’t possibly be sorry for, as they are not your doing. What we seek is to not be invisible. We seek to be heard. We seek to be seen as whole and not as broken. We seek to be lifted up for what we accomplish with this heavy burden instead of judged for the things we cannot do. A wounded soldier is not chastised for the war she couldn’t finish. She is acknowledged and praised for the powerful act of being willing to fight the battle. For being willing to give it her all.

To all the warriors of the world, I lift you up in pride for the battle that you fight daily. You may not be victorious in every war, but I salute you for waking up every morning with the intention to give it everything you’ve got.




Author: Trena R. Seymour

Image: Instagram/Sherri17

Editor: Travis May

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