5 Things Someone With Chronic Pain Wishes You’d Know

Writer Jenna Birch has experienced chronic pain for as long as she can remember. Here’s what she wishes people would understand about the condition. (Photo: Getty Images/Jutta Kuss)

I’m in my mid-20s, and I’m one of the 100 million people in the United States who experiences chronic pain. I’m often asked “What does it feel like?” — by doctors, by friends, by family members. This is the best way I can describe it:

Shooting pain moves in strip-like sheets from my forehead to the nape of my neck.

Erratic, unnerving stabs pepper my chest wall, just next to my heart.

Pain will seemingly gnaw its way through the bones of my lower legs, coating each cell with a heavy pressure. It’s stronger than an ache — it’s more like a throb that doesn’t relent in that characteristic, rhythmic way.

I have what doctors refer to as “fibromyalgia.” This syndrome involves a constellation of symptoms that occur simultaneously, including IBS-like abdominal pain, bloating and diarrhea; the urinary urgency, frequency, and discomfort of interstitial cystitis; memory and cognition lapses frequently referred to as “fibro fog,” headaches, and chronic fatigue — and, of course, widespread pain throughout the body.

My very first memory involves pain; a stomachache in a Kmart bathroom when I was almost five years old, where I cried and cried until the mind-numbing pain receded. For 15 years, I didn’t realize that it wasn’t “normal” to constantly experience pain. Every test for things like GI issues, urinary infections and deep-muscle soreness came back normal. So I thought that I was, too.

When my pain finally flared in college, it leveled me on and off for almost two years. I was often too weak to leave home. All food caused stomachaches. It hurt my head to lay on a pillow. It often felt like knives were wedged in each of my calves when I walked.

After tons of tests to rule out other conditions, I was finally told I had fibromyalgia by diagnosis of exclusion. And now, I’ve spent the past five years dispelling myths about what it’s like to live with pain. Here’s what I think you should know.

1. Pain is as psychological as it is physical.

Most people think of pain as physical. You stub your toe, burn your hand, or sprain your ankle, and you will have a physical response to the stimulus. Chronic pain is a little different.

Although fibromyalgia itself isn’t totally understood in all cases, my pain often has nothing to do with stimulus. Or sometimes, the stimulus is something that wouldn’t even elicit a response for most people — something like running, carrying my computer bag on my shoulder just a touch too long, even wearing clothes.

Due to some complex issues with my central nervous system, the signals being passed throughout my body all day long are — sometimes — incorrectly interpreted as pain signals. It’s basically a guessing game. My pain will arise from nowhere, and strike at will. I’m always anticipating it in some fashion — whether it’s a digestive, urinary, or musculoskeletal symptom.

My thoughts often read like a side commentary of worry:

Maybe I shouldn’t sign up for the 5K.

Maybe I shouldn’t go canoeing.

Is there a bathroom on this floor of the building? Better find it.

I don’t know what ingredients are in that enchilada. Better get something else.

I hope I can drive my own car. If not, I’ll have to remember my medications — and figure out where to put them.

I’m always trying to anticipate what might be potentially problematic with “stuff most people never even think about,” as one of my friends puts it. That said, I often feel like I’m a mother with a little one in the Terrible Twos — except my child is a finicky pain condition that likes to throw temper tantrums, and not a tiny human being.

So pain itself is never far from mind, because the threat is ever-present. Sometimes that stressor is the worst part of a condition, even when I’m having a great day where symptoms are virtually non-existent.

2. I don’t experience pain 24/7.

Lots of people believe that chronic pain is constant pain — as if you’re walking around in uninterrupted torture, with a red-hot poker stabbed into your side or feet dancing on needles. This is not exactly the case.

Chronic pain’s consistency isn’t that it’s constant. It’s that it’s reliable. It always comes back. And I experience some pain everyday.

On good days, my body’s pain responses are very subtle, and my syndrome is reduced to mere background noise. Perhaps I’ll have a minor headache for a few hours in the morning that I write straight through, aching along my shins as I walk on the treadmill, and a couple sharp chest pains in the afternoon that throw me off for a few seconds each.

Related: Survey Findings Highlight the Staggering Toll of Chronic Pain

On bad days, when I’m stressed, haven’t slept enough, or have overworked my system, the pain is a lot louder. On these days, it does last all day. The pain washes over at an almost-cellular level. I have a myriad of medications and pain pills, in addition to relaxation and resting strategies, to employ when necessary — but the ache is deep, full-bodied, and altogether exhausting.

Probably 90 percent of the pain sensations are manageable on their own, though, and I’ve learned to tune them out — like crickets on a summer night, or the sound of construction outside an office building. And all pain is different — constantly waxing, waning, and changing. Sometimes my chest pain will morph from a stabbing to a persistent ache. Or my leg pain will start in the ankles, move through my calves, and then shoot back to where it began. Or I’ll think I have a fibro headache, realize it’s becomes a tension headache, pop two ibuprofen, and proceed with my day.

Except on truly bad days, which I try to power through at all costs, little of this fazes me. One of the biggest responses I get if I mention that I have chronic pain is, “Really? But you don’t look sick!”

Related: 15 Things No One Tells You About Chronic Pain as a 20-Something

3. I am not broken, flawed, or wounded.

Ah, while we’re on that topic of “sick.” I know what “chronic pain” sounds like, especially when you’re in your mid-20s. It sounds like you’re wounded, tortured, sickly — probably a little dark and kind of a buzzkill to bring to parties, right? For this reason, I don’t tell many people in my life that I have chronic pain. I don’t want to sound feeble, damaged, or broken.

The truth is, in time, pain is something your brain filters out. You develop strategies to work around any unwelcome sensations that linger. You either learn to adapt with positive distractions, or sometimes cognitive-behavioral therapy can help. Otherwise, I do the same things as everyone else my age. I watch too many soapy CW shows, love a good sangria on Friday night, and go to every Michigan football home game.

I never think of myself as “in pain,” and I don’t want others to see me that way. It’s just an additional component to my life, something personal that I have to deal with from time to time.

Sometimes it means I’ll spend a night relaxing at home instead of going out to dinner, or that I’ll have to go to bed at 8 p.m. instead of staying up late. Maybe it means taking a pain pill, or going for a walk to clear my head when it gets foggy. And then the next day, likely, it’ll be a better day. (Ladies, you can think about it like the coping mechanisms you use for PMS — just more frequent and amped up a bit.)

4. I feel guilty if my pain impacts friends and family.

One of the worst parts of my pain condition is feeling like I’m a burden to others.

When my condition flared to unmanageable levels for the first time at 19, I hated seeing increased worry and exhaustion on my parents’ faces. Although they were amazing and would never complain, just knowing that my pain was taking a toll on them added to my stress. I don’t like to talk about my condition for this very reason. Not because I’m being evasive, but because I don’t want it to be a raincloud over my relationships — or factor into group decision-making.

Honestly, I don’t have a lot of limitations. But if the group is doing something I think may significantly worsen my symptoms — like going to a busy amusement park, eating at a restaurant with a lot of spicy foods, or participating in a high-impact sport — I remove myself from the situation quietly and leave my condition out of it. I don’t want others to make plans based on what they think I can and cannot tolerate. The thought: ugh, ick, yuck.

So, friends, a PSA: I totally appreciate that you’re thinking about my health and comfort when you decide on group activities that involve me. But I can handle me. You just do you, complete with all the fun things that make you happy — and then I’ll be happier (and probably healthier), too.

5. I wouldn’t wish it on anyone, but I also wouldn’t wish it away.

Whenever, if ever, I tell someone I have fibromyalgia, another common response is, “I’m sorry.” Well, they might be, but I’m not.

Admittedly, there are aspects of my condition that are not always fun, and I’ve had my ups and downs through the years. I’m also probably a closet worrier as a result of fibromyalgia — but nothing unmanageable or extreme (just your garden-variety over-thinker with a touch of anxiety!). But chronic pain has never held me back. In fact, I probably channeled my energy into productive activities as a way of coping with pain growing up.

I was a competitive athlete long before I was diagnosed. I was a good student. I went to the college I wanted to attend, and I graduated on time (with honors). And as a direct result of my condition, I also found my career. While I always wanted to write, I thought the daily stressors that arise operating in an office environment might be too much for me. So I found freelance journalism, with a larger interest in health journalism at that. All because of fibromyalgia.

I don’t know who I’d be without pain. So while I’d never wish it on anyone, I also wouldn’t wish for another life. Pain is engrained in who I am, helping to mold me into who I’ve become, just like my faith, family, friends, mentors, and career itself.

In the whole scheme of things, I’ve gained so much more from chronic pain than I’ve lost.

Read This Next: 1 in 10 U.S. Adults Experiences Pain Every Day. Are You One of Them?

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