The phenomenon of chronic pain conditions is widespread. It's thought that 50 million Americans experience or have experienced
chronic pain, and the problems that cause it vary widely, from fibromyalgia to spinal injury to autoimmune disorders. But the realities of daily life for people with chronic pain themselves are often less publicly known, because chronic pain is rarely visible; it's one of the most common "invisible disabilities." Drawing back the veil on how what chronic pain feels like, and how it influences very ordinary everyday experiences, from going outside to work and sleep, is seriously important for a deeper understanding of just how serious it can be.
A significant part of the difficulties experienced by chronic pain sufferers doesn't necessarily relate to the pain; it's caused by the fact that other people don't believe their pain is real. "Because we can pass for a healthy person, many people think we are faking or exaggerating or symptoms for attention or out of laziness and not wanting to work," Lynn Crisci tells Bustle. Crisci, who has Ehlers-Danlos Syndrome and fibromyalgia, is also
a survivor of the Boston Marathon bombing, which left her with chronic lower back pain, a frontal lobe brain injury, hearing loss, and other chronic conditions. "The truth is that we do spend all day every day faking — faking being well," she explains. "Every time we catch someone looking at us, we plaster a fake smile on our face. This is for the comfort of everyone else but us. If you look and act like you're in pain all the time, no one wants to spend any time with you."
Erin Jackson, who suffered from chronic pelvic pain for 10 years, agrees. "People often didn't understand how difficult tiny tasks were: prepare food, write an email, use the bathroom," she tells Bustle. "I couldn't sit without pain, so I stopped driving, working, and traveling. A family member once told me that I should get a cane so that people would believe I was disabled. The everyday experience of just
existing was difficult, yet people constantly questioned the validity and veracity of my pain." Getting an insight into just how difficult the daily life of a chronic pain sufferer can be might go some way towards fixing those misconceptions. Here are some everyday things that are difficult for people who live with chronic pain.
Sleep is often a particularly vexing experience for chronic pain sufferers, who may need medication to be able to rest properly. Stephanie McDonald, who was diagnosed 11 years ago with
post-herpetic neuralgia, or nerve pain resulting from shingles, tells Bustle, "I find that pain meds really help me have a fairly normal day, but I find myself being physically tired by 7 P.M. I'm typically in bed between 7 or 8 P.M. each night, so maintaining friendships can be challenging. Those closest to me understand that I'm early to bed and early to rise and we find time to get together."
Nika Beamon, who has a
rare autoimmune disease called IGG4-RD, experiences chronic inflammation of her ovaries, esophagus, liver, and stomach. She notes that pain structures her sleeping and waking routine. "If pain hasn't woken me up in the middle of the night, causing me to reach for a pain pill (Tramadol) on a side table next to my bed," she tells Bustle, "my day starts like most people. I drag myself to the bathroom to the shower in my room. On bad days, in addition to swallowing medication, I head to the hall bathroom in my house that's equipped with a bench so I can sit down to bathe." When she comes home, she says, "I can only sit up for a short time before the pain forces me to lie down on my bed. I often finish dinner there and then head to sleep less than three hours after getting home."
Leaving the house and taking public transport to and from work or other venues can be exceptionally challenging for people suffering from chronic pain. Keisha Galbraith, who was diagnosed with
arthritis that developed into chronic pain and ulcerative colitis, tells Bustle, "I regularly took a walking stick on the train so people would give me a seat because you can’t see chronic pain and people don’t take notice of a hunched over, wincing woman. If I didn’t have the stick and was walking slowly, people would shove and push me in crowds."
When it comes to the daily commute, Nika Beamon explains that she knows the entire process backwards, from the number of steps to the possibility of handicapped seating. "It takes me more than 600 steps to get to my bus stop which is downhill," she says. "I use the cane, which I've had for two years, to steady myself." She catches the train in New York, but tells Bustle, "I always look for a seat in the handicap section near the door but there often isn't one nor do people offer me a seat. So, I walk down the aisle, keeping my cane to my side, until I find one." By the time she arrives at her destination, she says, "my foot is asleep, my back and hips are throbbing, and if the pain is intense I also get a headache." And this is just one direction in her everyday working commute.
Ronald Citron, who suffers from
L4 spinal stenosis, explains that it interferes with walking trips that healthy people take for granted — like going to the shops. "Some days the pain is so bad I cannot walk around a large department store or a grocery store," he tells Bustle "This condition has greatly reduced my ability to walk any significant distance, preventing me from going on normal walks with my wife and my children and from going to national parks. I even find it difficult at times to shop for necessities at grocery and home improvement stores."
Working with chronic pain can become seriously difficult and have enormous economic consequences for people with pain conditions. "I used to have to plan my work days based on the point at which I’d lose all my energy," Keisha Galbraith tells Bustle. "I’d arrange my workload so hard tasks were done in the morning and easy tasks would happen after 2 P.M. This was both because I was sore and because I was high on a frankly ridiculous amount of opioids. I organized to work a day a week from home so I could get rest. I had to give up freelance work which meant I struggled to afford my medication, because all my spare time was spent resting."
Hillary Jastram, who owns a copywriting company, explains to Bustle that her entire work environment has to be structured around her pain from spinal inflammation. "I don't have a desk in my office," she says, "and I make the rounds from bed to couch to another coach in my office. My office is portable (for the most part) and designed for comfort. Since I have nerve pain, it is imperative that I have very plush, soft slippers on and sometimes even pajama pants. I have to have my feet up and sometimes they must be elevated, on a pillow." For others, like Nika Beamon, the situation is less helpful. "Neither my desk nor chair are specially equipped by my employer," she tells Bustle, "so I have purchased a pillow to raise my hips and a back massager that attaches to my chair. I swallow the medication for my autoimmune condition and often another pain pill so I can start my day."
How do you hold down friendships if you're so tired and sore you just want to go to bed immediately every night? "The problem is that you are not in control of your body," Crisci explains to Bustle. "This makes it very hard to make and keep plans with family friends and jobs. You have no idea how your body is going to feel from one day to the next."
Going out as someone with chronic pain requires a lot of preparation. Beamon explains, "I always refill medications to make sure I have them on hand when I need them. I often check to see if a place is handicapped accessible so I can get around with ease with my cane. I try to find taller chairs to sit in when I go out to eat or to events so I can get up easier. I also have my medical information in my phone and my cell phone near by in case I have any sort of medical emergency. Additionally, I've made sure all of my important papers like a health proxy, etc, are easy to find in my home." For chronic pain patients, being a social person can require an intensive battle plan.
When she had serious pain, Jackson tells Bustle, "a simple thing I missed the most was time with friends. When I was with my friends, I could only think of the fact that I was in immense pain. I was usually sleep-deprived, dealing with gross side effects of a new medication, or anxious that the social encounter would worsen my pain." Friends, she says, didn't get how difficult it was. "I often felt like they didn't understand how incredible it was that I was ever able to see them. When I'd cancel plans because I wasn't feeling up to it, they'd sometimes mention that I'm sick a lot, or they'd get angry that I couldn't attend their wedding or special event. It was emotionally excruciating, both because I felt that they weren't empathizing with me and because I was missing out on these moments that I really wanted to participate in."
Taking a vacation raises many issues for those with chronic pain. One in particular is the possibility of taking leave from work. "I used all my sick and annual leave on days I couldn’t leave bed or days I would leave work early and fall asleep on my parents' couch. I still don’t have any leave," Galbraith explains, "which means I can’t take semi-regular holidays to keep my stress levels under control (which contributes to the pain)."
It also means giving up certain hobbies. "I love to go on walks and used to walk long distances of up to twelve miles at a time," says Citron. "I also loved to ride my bicycle and at times used to take fifteen to twenty mile trips, something I can no longer do because of the shock to my back from the bike and the pain caused by the narrow seat."
People with chronic pain can also be hugely sensitive to environmental factors they can't control. "For some of us," says Crisci, "a drop in the barometric pressure, often due to a simple rain storm, can send us into a migraine. Imagine that you bought tickets many months ago to see your favorite performer. And then it happens to rain and you get a migraine." Some people who suffer from chronic pain also have symptoms of serious light sensitivity, or photophobia.
Migraine, fibromyalgia, and traumatic brain injury are all linked to photophobia, and outside light or lighting in malls and interior spaces can trigger pain, nausea, vertigo, and other symptoms. And even without those triggers, chronic pain sufferers are at the mercy of their condition. "I had to cancel a vacation with my wife and daughter to the Grand Canyon and Las Vegas because of a major flareup that actually prevented me from even walking small distances of a hundred yards," Citron tells Bustle.
"I think the biggest misconception about people living with chronic pain or a chronic illness," says Beamon, "is that if we aren't complaining or asking for help we are fine. Most of us are in pain every day but say nothing. We make all sorts of adjustments to make our lives more comfortable and to function like everyone else. Coping with a chronic illness means every day is different. It can change our plans at a moment's notice." But, she says "it makes most of us more grateful for everything we can and do accomplish."