What It’s Like to Live With Chronic Pain

The reality of living in a body that’s against me

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Whenever I wake up, there’s this brief moment where I forget that I’m in pain. It’s like my brain has begun to wake up, but my physical body is still dreaming. It only lasts a second, and then my pain washes over me like molten lava and I remember that this is my reality.

At any given moment, my feet are aching or burning or prickling — sometimes all three. My chronic foot pain never goes away.

The pain began when I was twelve. I was born with severe bilateral club feet, and spent most of my childhood in either thick, plaster casts or recovering from surgery. When I hit my pre-teen growth spurt, my doctor discovered my feet were trying revert back to their original position. Four surgeries later, and I’ve got arthritis in my ankles, nerve damage in my heels, abnormal bone structure, and tendons that aren’t where they’re supposed to be. Combine these ingredients, mix them up, and you’ve got one horrific recipe for chronic foot pain.

What a lot of people don’t understand about chronic pain is that, even though it’s a symptom of my club feet, the pain itself is a disease. It has its own symptoms and requires its own treatment. Most of the time, it feels like a virus that’s infecting every other part of my life.

Take today, for instance. From the moment I woke up, I knew it was going to be a bad pain-day, but I had so much work to do that spending all day curled up in the fetal position wasn’t an option.

So, I end up sitting in a cafe with my laptop and a cup of coffee in a chipped mug. Even though I’m out in public, I’m not in the mood for social interaction. It’s too early in the morning, I haven’t drunk enough coffee, and my pain medication hasn’t kicked in yet. Technically, I’m supposed to be working, but all I can think about is the sharp, stabbing pain in my right ankle and the slow burn on the bottom of my left foot. I’m surrounded by people, but it’s just me and my pain.

This is, of course, the moment that an old friend from high school spots me and decides to saunter over. She has no idea I’m in pain. She starts to ask me about what I’ve been doing, where I’m working and if I’m seeing anyone new — but I can’t think long enough to drum up an answer for her. All I can think, feel and see is the pain. My brain feels foggy, and my thoughts are unreachable. I like this girl, but I hate her in that moment.

Eventually, the only thing that comes out of my mouth is a half-mumbled, “Um…how are you?”

After she spends five minutes recounting her excellent job and great relationship, she — thank God — does one of those polite, awkward laughs and tells me she’s got to get back to her table. It isn’t until ten minutes later that I start to feel the pain in my feet lessen and my mind clear as the pain meds begin to circulate throughout my body.

My pain doesn’t always make me an antisocial caveman, but when I’m having a bad pain-day, it can feel all-consuming. Like today, I can experience moments where the only thing to focus on is the pain, and everything else is static background noise.

I have good days, too. Sometimes, my pain feels more like a domesticated house cat rather than a roaring lion. On those days, I’m capable of conquering the world. I crumble my chronic pain up like a piece of paper and stash it in a box within my brain. On good days, I’m almost normal.

Unfortunately, even when my pain isn’t terrible, my condition still manages to invade my life in other ways. Currently, I have three different doctors: a specialist for my club feet, an orthotist that creates the custom inserts for my shoes, and a doctor that exclusively treats my pain. As I said, pain is its own monster.

Of these three, my pain doctor is the most important — I see him every three months, and regularly call his office whenever I need a new prescription. By this point, my doctor and I work together like a well-oiled machine. Of course, when I first began dealing with chronic pain, managing it wasn’t always this easy.

As a teenager, I endured four surgeries, two bouts of physical therapy, and a myriad of useless medications that harmed more than they helped. Not every doctor I saw took my pain seriously, and many of them wanted to perform extensive surgery or just told me to live off Tylenol and Ibuprofen.

So, even if it took me several years to do so, finding a doctor that actually listens to me has been a godsend. It does come at a cost: of the three medications I take, one is opioid.

In light of the opioid epidemic and new state regulations, not only does this mean that the clinic must drug test me on a regular basis, but I’ve also had to sign a contract that says I won’t take other drugs or drink alcohol. I don’t like having my life regulated that way, but it’s a small price to pay for medicine that can effectively manage my pain.

This is my reality.

Are there positives to the pain?

Don’t get me wrong — living in chronic pain sucks about 99% of the time. Yet, as much as I hate it, there’s a small, weird part of me that’s grateful for the pain (and it’s not because I’m secretly some masochist).

Dealing with chronic pain at twelve years old forced me to grow up quickly. It altered every part of me and changed the route of my life. I’m sure that there’s some version of me in an alternate dimension that lives a pain-free life, but I’m not sure I want to meet her. I don’t think I’d like her.

I have no shame in admitting that chronic pain has made me tougher. Even if I’m still in physical hell, I know that I’m strong. I can endure hardship because I’ve been dealt a shitty hand, and there’s something to be said for that.

I’ve also learned that my suffering isn’t unique. I’m not the only one in pain. It sounds like a cliche, but all of us are fighting battles — we just tend to forget that. More than anything else, pain is isolating. It forces us to believe that we’re alone, but even in the face of unsupportive family members or friends, we’re never truly alone. We’re still suffering in a sea of sufferers.

We might not be able to change our realities, but we can do two things: we can remember that pain is a universal experience, and when we wake up, we can cherish that single, pain-free moment.

When I’m not writing, you can usually find me hanging out with my cats. pricelindy@gmail.com

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