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.

Follow this journey on 29 Going on 92.

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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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What Are the Best Ways to 'Be There' for a Partner Who's Living With Chronic Pain?

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Last night I Googled, “How to be there for your partner when they are in chronic pain.” I needed some external references. Some tips and, maybe, to feel a bit of community knowing I’d likely find shared experiences from people who too love someone and can’t help them get relief either.

When loving a someone with chronic pain (CP) or illness (CI), especially for prolonged periods, you experience an alternate “chronic” reality where you are exposed to the ways society treats CP or CI, yet you don’t ever feel the actual pain or symptoms yourself. You, of course, experience your own tangential emotions and feelings, and those are valid and reflections of a world only someone who loves someone with chronic illness likely knows. But at the same time, we cannot feel the physical or physiological pain our loved ones do. And I think it’s because of this that I often feel lost about the best way to be there for my partner when he’s experiencing a “pain cycle” (where his pain is significantly worse than his average day, typically occuring in stretches of several days to a week or more).

Ask someone with chronic illness or pain what they most wish about their relationships (friends, parents, siblings, lovers, spouses, co-workers, etc.), and “if they could feel my pain” usually ranks pretty high. I wish I could, too, and if you love someone with chronic pain or chronic illness, you probably wish you could, too. Not for too long (because I often think I wouldn’t survive it), but just long enough to know how to best support him when the pain hits hard.

My spouse has had chronic pain and illness for 10+ years. Our lives are wonderful but cyclical, and as most readers who have struggled with long-lasting health challenges know, life is populated with extreme highs and lows. I like Michelle Obama’s quote that “When they go low, we go high.” I’d say that’s most typically approach for when my husband is at a low point. I try to go high with enthusiasm (to inspire him that I’ll never lose hope), high with researching new treatments ( I’m a fixer — more on that later), high on loving on him. And all that going high can be a bit much for the person gritting his way through day five of nine out of 10 gut-wrenching pain, nausea and no sleep. So, that’s not always the best course of action.

Not being able to be there for him in a way that ultimately makes him feel good is kind of a buzzkill for someone who generally likes to please (me). And so, over the years, I’ve oscillated between different ways of trying to be there during the pain cycles. Sometimes I “go high” as I mentioned above; it’s my most natural response. Other times I try to give him space so he can just be in his pain without needing to worry about me, shelter me, etc. Some times I try to bring humor to him. Other times I share my fears, and those generally seem like the worst outcomes (so, I try to avoid sharing when he’s in a pain cycle).

Curious about your approach to loving someone with CP or CI. If you have tips that have helped you be there for the person experiencing a chronic condition in your life, I’d love to hear about it.

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When Your Chronic Pain Is Like White Noise to Those Around You

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Years ago, when chronic pain ruled my world, the only place I felt heard was alone in the ocean. I loved the waves crashing over me, melting away the screams I could no longer manage to voice. I loved looking out into the endless ocean because it was the only place that gave me hope that life still existed: the ocean expanded so far, I felt that maybe no matter how bad of a place I was in I, too, could one day expand as the ocean did. I loved the feeling of being crushed by the rough waves and treading under water as I heard the faint noise of the water above. What most people feared about the ocean, was what I found as the only peace that still existed in my world of pain.

The Oxford dictionary defines white noise as noise containing many frequencies with equal intensities. Invisible illnesses such as chronic pain also contain many frequencies with somewhat equal intensities. Chronic pain does not come alone. Chronic pain is followed by many other white noises: fatigue, depression, anxiety, insomnia, hopelessness, and sadly sometimes suicidal thoughts and ideations.

Over time people forget one has chronic pain and their screams can literally only be heard as white noise. They may feel alone, hopeless, and many find places such as I did with the ocean as the only place he or she feels heard and/or understood. In 2005, the movie “White Noise” came out starring Michael Keaton. He plays a man who loses his wife, Anna, unexpectedly and becomes obsessed with finding her on “the other side.” He meets a man who works with the supernatural using a device called electronic voice phenomenon (EVP). He is a skeptic at first, but soon becomes a believer and makes it his life’s mission to speak to his wife through EVP or as others call it, white noise. I enjoy this genre of film and although this is not my favorite “ghost movie” it does correlate with how I view my struggle with chronic pain.

young girl ini life vest in ocean
Jessica’s daughter

Both the characters played by Michael Keaton and his deceased wife are trying desperately to speak to one another, but all they are able to hear is white noise. Trying to explain an invisible illness, such as chronic pain, comes out to those who do not have chronic pain as white noise.  The words are there but they are not comprehensible to the people we so desperately want to understand us and what we live through each day.

For over 10 years I knew no one with chronic pain. My life was filled with white noise drowned out by the voices of doctors, friends and family. No one could hear me and soon my screams could only be heard inside myself. It was not until I went to the Mayo Clinic in Minnesota and entered the Pain Rehab Center that I met others who also had chronic pain and my white noise slowly faded away. I did not need to explain what I felt because I was surrounded by others who felt the same exact way. I learned so much while at the Mayo Clinic and practice the tools I learned there daily to manage pain without medication or treatment. However, what I benefited from most was the commonality I found amongst my peers who also had chronic pain.

The worst part of an invisible illness is not being understood. All you need is one person, whether that be a friend or family member or in my case a total stranger I met in the middle of Minnesota, to truly understand how you feel. I hope my writings and stories help drown out your own personal white noise. You are definitely not alone.

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