When People Offer to Pray for Me Because of My Chronic Pain

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I’ll read an article, talk to a friend, skim a forum. People want to share comfort with me, a sign of their love and care for their fellow human being going through a tough time; to share their strength. They tell me to stay faithful, that they will pray for me. But I am an atheist.

I am not an atheist because of my chronic pain or anything else that “happened,” as people sometimes ask when I tell them I’m an atheist. I was raised in a non-religious home and exposed to many ways of thinking — world religions and cultures, poverty, minority injustice, philosophy, history, empathy, books upon books upon books. At 12, I decided for myself that, personally, I did not believe in god. And that was OK. I could still be the hopeful, happy person I was, enthralled by the universe and existence, driven to help people to suffer less in this world. And I still feel this way, 11 years later, even after living the last two years in constant chronic pain.

Pain has changed what I thought my life would be. But it doesn’t diminish my worth as a person in this world, and it doesn’t change my goal of wanting to reduce suffering. That goal just needs to include reducing my own pain, too. And even though this is a different life than I thought I would live, it is still so utterly worthwhile.

So many people give me their love in the form of religion. And I accept, gratefully. I understand this is the way some people share their compassion. However, I also explain that, for me as a person who actually doesn’t share this religious connection, it might be better if — instead of praying or informing me that strength can only come from faith — if, instead, they gave me a hug. Or told me they love me. If they said that they don’t want me to hurt anymore, that it eats them up, that they don’t know what to say or how to make things better. If they met me on a human level and said, “I hear you are in pain, and I want to say that you are loved and worthwhile and important, and I want you to feel better. And if you can’t feel better, then I want to be here for you when you need me. Here is my shoulder, here is my hand. We can work together in this hard life, and you do not have to be alone.”

Personally, I still love living my life. There are books to read, adventures to be had, new things to learn and discover around every corner. This world and this universe we experience are so awe-inspiring. For a brief moment in the history of the universe, we get to open our eyes and experience everything we can, to drink in this amazing life we have to live.

I find strength and hope and happiness in the amazing people and the simple pleasures in my life. In my family. In my friends. In my kitty cat Pumpkin, and the beautiful boy I am seeing right now. In books and films and songs and games. In ice cream and strawberries and grilled cheese and delicious vegetarian meals. In cute baby animal videos, and musicals, and good coffee. In Harry Potter. In stargazing. In staying up to the wee hours of the night. In sci-fi and philosophy. In rainy days and holidays, Disneyland days and comfy recovery days. In scented baths and ice packs, ibuprophen and so many pillows. In learning. In laughter. In the promise of travel. In deep conversations. In kisses. In tight hugs, and gentle ones.

I find comfort and optimism in living in the modern era of medicine. In finding new pain solutions. In good doctors who want to help. In having access to medications and treatments that may help.

I find courage and gratefulness and love in myself. In my natural optimistic disposition, which I am so grateful for. In being able to have the autonomy I have. In feeling the full range of human emotion. In my sharp mind and my strong, incredible body, which hurts but doesn’t mean to, and does so much else for me.

I find wonder and inspiration in the world around me. In exploring, learning, creating, understanding. In mysteries and innovations. In getting swept up in passion for something I’m doing or seeing or going after. In the whole range of human experience, culture and life in every corner of this earth; geography, architecture, tradition, civilization, ways of life that highlight our similarities as well as our differences. In pondering the depths of mysterious, unexplored oceans and taking trips into tall, cavernous mountains surrounded by boundless forests of trees. In the wondrous reaches of outer space, which is both infinite and expanding, and all the journeys of scientific discovery we are embarking on through our step into this “final frontier.” In seeing people get the things they need to live better lives, or even just have better days. In this whole, big, beautiful world around us filled with wonder and possibilities.

If you find strength and hope and comfort in your religious beliefs, I am happy for you. Find it anywhere you can and cherish it, as long as those beliefs are not harmful to yourself or others. But don’t assume it is the only way, because it is not.

There are so many places to find hope and strength in this world, even when your world is painful. For me, religion isn’t one of them. And that’s OK.

Image via Thinkstock Images

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For Anyone Who Wants to 'Do Something' to Help a Friend With Chronic Pain

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The difficult part about chronic physical pain is that it is always there and, oftentimes, won’t let us ignore it. Chronic pain is the 2-year old at the grocery store pulling items off every shelf and begging Mom to buy them. It’s the power screwdriver whose reverse setting is broken and can only tighten. It’s the unrelenting desert sun that doesn’t have the capacity to allow even the smallest shade-providing cloud.

But sometimes, no matter how skilled we think we might be in coping with the emotions that present themselves along the way, we need time.

And distance. And empathy. And even distractions to just get past this particular moment in time so we can somehow be present for the next one without being pulled into a pity-producing abyss. 

That doesn’t mean we’re “suffering with pain.” I believe suffering comes from turning away from the emotions triggered by ongoing pain and hoping they’ll either go away or a magic fix will appear from around the corner. However, it does mean that we may need to gain some separation from the world until we can get through the more challenging moments and climb back onboard the mothership. 

The hardest part can be the desire of well-meaning friends and family who want to “do something” to help.

“I know a great orthopedist. He fixed my mama’s gout. Let me give you his number.”

“Jamaican dogwood tincture. It’s on all the doctor shows on TV, man.”  

“Tumeric paste. I know it sounds crazy but my cousin in Wisconsin put it under his arms when he went to bed and the next morning he was fine.”

Or, maybe, they don’t necessarily know what that entails but the specifics don’t matter. If they are being genuinely empathetic, they are sensing some of what we’re feeling and want us to feel relief for our sake.

But let’s be honest. Most folks become uncomfortable and feel helpless in the presence of someone else who’s in pain. 

I think that’s because we don’t like unresolved issues or problems with no discernible answer and we certainly expect modern medicine to be able to fix everything.

That makes the “solving” of the pain problem about them as much, if not more, than it is about us. And that’s the difference between sympathy and empathy. It’s not an act of benevolence when our relief solves a problem for them.

It can be so challenging not to have a standard reply for those times. Sometimes, we want a friend to say, “It must be so frustrating to have to face this without the comfort of knowing that there’s a cure around the corner. How can I best support you?”

Sometimes, we just want to be alone because we feel like crying or yelling into a pillow or simply breathing purposely until things subside enough to move forward. Sometimes, we need to lay still and watch “Seinfeld” reruns to take our minds somewhere else. Sometimes, we need a shot of steroids or even tequila!

But there’s no template for coping with chronic pain because it differs for each person and even differs for each individual, depending on circumstances.

People with chronic pain should surround themselves with those who, as much as possible, understand all this. Or at least, be willing to explain it so they won’t be in the dark about how you’re feeling. I think toughing it out in silence only serves to confuse those who genuinely want to be helpful, even if it’s just being available to listen non-judgmentally when we need to vent or to pour that shot and distract us with a funny story.

To our friends, please try not to be frustrated if we can’t explain what we want. Just love us unconditionally, hold our hand and bring us bacon. 

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When You Experience ‘Pain-Shaming’

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I want to talk about an experience I call “pain-shaming.”

I cried after calling the doctor’s office the other day. Afterward, in a wave of fury, I called my mother. She answered FaceTime with her usual big smile, and I could barely talk.

She knew something was wrong. I told her I had just made that dreaded call for another prescription — the stuff prescribed for “severe and disabling pain.”

The receptionist who took my call said, “It’s only been a few days since your last script. The 25th, actually — almost a week, but not quite.”

Through gritted teeth and desperate composure, I replied, “I have had chronic pain for five years. The doctor has written this for me before.”

My heart was now beating so low in my chest, I felt like I was going to birth it right then while the receptionist talked me through heart labor. After I hung up, I imagined her sitting at the office, and then arriving home, maybe to the smells of her slow cooker. Meanwhile, for dinner at my house, I’d organized braised nothing with a side of not much else.

Poor Mum, she lives away and feels helpless, so I don’t like to tell her too much about the reality of my day-to-day. But on this day, I’d had enough.

I told Mum about the enlarged eyes the women behind the counter get when they realize just how much medication I’m actually taking.

I told her I somehow now had a guilty conscience every time I saw my own doctor.

Once a prescription went missing, and all hell broke loose. There were phone calls to someone who was trying desperately to retrace every step the prescription had made.

After a 20-minute investigation, it was revealed that my pharmacist had not given me the required amount. The tension that was released from the air was palpable. Suddenly, I was back to being “nice mummy with a bob” who just needed something for her chronic pain. Back to being that well-spoken journalist with a sensible satchel and nicely-dressed kids.

I am one in five Australian adults in chronic pain, and many of us who require medication deal with this relentless conjecture on a daily basis.

I do not take pain medication for sh*ts and giggles. I am trialling a vegan diet, and I save alcohol for special occasions. I practice yoga and meditation, and I’m exploring a spiritual path. I even like crystals and salt lamps! Why? Because I have had to stare a lifetime of pain square in the face, and the only way I can deal with that is to do the best I can do with what I have left.

Isn’t it funny that we have teachers working tirelessly to stamp out bullying in the schoolyard, yet in the workplace it’s expected for us to just “harden up”?

When I took my toddlers to get their vaccinations, I watched them get jelly beans as nurses jumped around in front of them blowing bubbles. But when you are an adult getting your annual prick, you might just be told to look away.

Why does the kids’ hospital ward always have colorful walls with adult entertainers making bulldozers and Disney castles out of balloons? Where’s my Patch Adams?

We give children love, care and laughter when they are unhappy. Throw them parties, give them cake. But those of us “adulting” or dealing with sicknesses or diseases are expected just to “get on with it.”

There are certainly no teachers asking us if we are OK. No goody bag for the drive home after a colonoscopy.

Empathy is not something you can write a prescription for.

It comes from your husband bringing you a cuppa in the morning when he knows you are at your sorest; a friend who shares her lunch break with you because she knows you have a lot going on; or a neighbor who offers you their stand-up desk to borrow so you can see if it will be good for your back.

We’re not asking for much. Just some acknowledgement that we’re going through a tough time. And less Nancy-Drew-Sherlock-Holmes-eyeballing. Oh, and a letter asking, “How can I help?” with a voucher for a free neck massage thrown in for good measure — that would be fantastic.

And maybe a lollipop, too.

That would be nice.

Follow this journey on Pennyshipway.com.

Lead photo source: Thinkstock Images

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This Is What Chronic Pain Looks Like

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This picture is of me waiting at urgent care. I am in my scrubs because I just got off work.

black and white photo of woman in a medical office

I got mistaken for a nurse by a doctor who was wanting to know where the lab is located. I had no clue because I am not a nurse in this facility. He had no idea I was in pain or even a patient.

This is what people with chronic pain look like. They look like everyday people with jobs and families.

We have become so accustomed to hiding the pain that we are able to fool everyone around us.

I got up this morning put my son on the bus for school, hung out with my toddler, went to work, and now I sit in a crowded urgent care waiting to be seen because my pain is becoming unbearable today. I have pain most days, every day. Today it lingered, today it’s winning.

No one noticed that I was in pain. I put on a smile and went about my day.

When I registered at urgent care and the nurse asked why I was being seen I cringed.

I said softly, “Back pain.” I could feel the cold judgment pouring out of her eyes. Did she think I was a drug seeker, attention seeker, or looking just to get a work excuse? She can’t see the rods that are fused to my spine, or the weak joints from living with Marfan syndrome. She didn’t know that every day I am taking the max amounts of ibuprofen and Tylenol. She doesn’t know that I have spoken to my doctor about the pain and she shrugs it off saying if it gets worse we will send you physical therapy. She doesn’t know my doctor hasn’t taken more then three minutes to discuss my chronic pain. She doesn’t know that a part of me is terrified to go seek help for pain because I am afraid it will be ignored, or even belittled. It has before.

Chronic pain has its claws latched into me. I will always have this pain. But As much as I can push through it, I will. Chronic pain hides behind a smile. Chronic pain is not going to steal my days. I will keep on pushing, fighting, and living.

Some days are better then others. Some days I have to give in. I have to let the pain win.

Chronic pain might be invisible to the world around us, but it’s real. It’s a constant battle.

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If Life With Chronic Pain Was a Musical

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I hadn’t slept in a week, I was weak, I was awake…

Wait… I didn’t write those words.* Shoot.

If my life was a musical, I would be stuck in the part about three-fifths of the way through when the main character is feeling overwhelmed and hopeless. Usually, a song is sung to mark this moment, and intermission takes place right after. Then you pee, eat your candy, down a plastic cup of wine, and the musical kicks up again with a much more upbeat song so that everyone doesn’t go home depressed.**

The problem is that life is not a musical, in spite of all my efforts. Instead of us trying, being knocked down once, and giving it just one more go before succeeding brilliantly, we get knocked down over and over and over again until we are sick of picking ourselves back up. Real life also lacks a killer score and impromptu dance numbers. I guess we can’t have it all.

You could be like me and cushion this blow by listening to every soundtrack you can get your hands on and spending any extra money you may have on theater tickets. Nevertheless, like all distractions from our problems, the show ends, the lights go up, and you’re pushed back into the real world in less than three hours.

I think I may have figured out the secret, though, to this whole chronic pain debacle. This point in the musical when the lead is at rock bottom is typically when the best song is sung. This is when things really get good, and frankly, it’s the only reason the musical is even worth seeing.

Yes, times in your life that are sunshine and rainbows look great on Instagram, but they don’t lead to personal growth. No one who ever accomplished anything says in an interview, “You know, life was perfect. I was making tons of money, married my beautiful wife, and then I won the Nobel Prize and it was just so easy! I don’t understand why people complain about how hard life is!”

Triumph, success and all of our celebrated moments follow some sort of struggle or heartache. If my compelling musical argument isn’t enough to convince you just think of Batman, any character played by Liam Neeson, or actual real-life history. I’ve been telling myself since the beginning of my orthopedic issues that there must be a greater reason for all of it. After meeting one of my doctors who is single, my age and gorgeous, I was convinced my chronic pain existed so that we would cross paths, but that hasn’t panned out yet.

Still, I continue searching for the meaning of all this nonsense and will feel much better about my daily pain once I can justify it with some sort of personal achievement or happy life event. Until that day, I guess I’m just going to have to distract myself with anything I can get my hands on, whether it’s the soundtrack to a new musical or something normal people listen to, and wait this out. For the sake of the people who graciously spend time with me, and my own sanity, I hope it’s sooner rather than later.

***

*Lin-Manuel Miranda did. Thank you, Lin.

**Of course this is different in the case of the following shows: “Spring Awakening,” “Next to Normal,” “Fun Home…” those are just sad, gut-wrenching (yet still wonderful) shows.

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When the Hardest Part of Your Chronic Illness Is the Way People Respond to It

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I look in the mirror and don’t even recognize myself anymore. Where is the strong, confident, beautiful girl I used to be? Ever since I got sick, I slowly shut out everyone and everything in my life until I had my own world of books, music, doctors and my husband. I rarely left the house except for shopping and many, many doctor’s visits. Somehow that routine stuck. Two years later, that is still my life.

I stay home, clean, then relax all day, trying to manage my pain and hope I can make it one more day. On my good days, I manage to clean the house and maybe do laundry. On my bad days, all I can manage to do is move from the bed to the couch, and usually I don’t move from there, not even to get something to eat.

When I first got sick, I still went out with friends and family, still had whatever social life I could have while being in pain all the time. But after a while, I got sicker and started having more pain then I could handle. I started staying home more, relaxing. The longer I stayed inside, the less I got invited to do anything. Pretty soon the texts and calls stopped completely after not being able to go out due to my severe pain levels. After a while, I just turned off my phone and ignored everyone, becoming self-isolated. I couldn’t stand to go outside because I knew if I did, I would be in pain or I would see someone I knew and they would avoid eye contact and walk the other way.

This isn’t to make you feel bad for me. This is just what I do every day. I am not “lazy.” I am in pain. I do not sit around because I want to; I sit around all day because I have to. I do everything I can do make myself feel better every day. There is no cure for my disease, and I am not optimistic for any cure in the near future. I have lost many friends and family members over the course of my life, but not as many as I have in just these two short years. Yes, part of it was my fault, but part of it was also theirs for not trying to understand when I didn’t feel good enough to go to the movies or walk around town for a few hours. I’ve been told I’m making excuses because I just want to be lazy all day. I’ve been told it is too hard to be around me when I’m going through this, or that if I had just done something differently, maybe I would not have “caught” this disease. This is not something you can catch.

Chronic pain is no joke. Most people with chronic pain try to hide how much they hurt because they do not want to feel like a burden or because people get tired of them always saying they do not feel good. But do you know the hardest part of this disease for me? It isn’t the constant pain, or the severe lack of sleep due to pain. Its the fact that when some people ask about me and what I go through, they decide after listening that it would be too hard for them to stay around while I go through this. So they leave. Thinking it will be easier for them. It may be for them. But for me? That’s the part that hurts me.

Every time someone learns I have severe health problems, they give me that look like I shouldn’t be out of my house. Some of the comments I have heard either directly said to me or behind my back when they thought I was out of earshot hurt so badly, I started to believe those things about myself. For months I laid in bed, just thinking those things over and over again.

Life has not gotten much easier since I got sick. It’s still the same routine and same boring day after another. But there is one difference that wasn’t there two years ago: I am stronger now. I can finally feel good about myself again. When I start feeling down, I just look back and see how far I have come.

My illness used to control me. Now I control it.

Image via Thinkstock Images

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