The numbers tell one story. More than one in five U.S. adults reports having chronic pain, according to 2016 data from the U.S. Centers Disease Control and Prevention (CDC). And arthritis is a leading cause: Last year, CDC researchers reported that 48 percent of people with arthritis lived with chronic pain, which was substantially higher compared to those without arthritis. They also found that 22 percent of adults with arthritis had what was called “high impact chronic pain,” which is defined as pain that has lasted at least three months and is severe enough to interfere with a major life activities (like being unable to leave the house for work.
But the numbers can’t convey what living with invisible chronic pain every day is really like. Enduring this type of ongoing, daily pain impacts every aspect of a person’s life, both big and small, including their jobs, relationships, finances, self-esteem, and health, says Medhat Mikhael, MD, a board-certified pain management doctor specializing in chronic pain at MemorialCare Orange Coast Medical Center in Fountain Valley, California.
“In fact, for many people with chronic pain conditions, it isn’t a problem in their life — it’s the problem of their life,” he says. “It is hard to do anything else when you are in pain.”
To find out just how much chronic pain changes everyday aspects of your life, we asked people who deal with it on a daily basis to share the most surprising and frustrating ways pain has impacted them — from “small” things like everyday errands to “big” ones like careers, finances, and personal relationships.
You may want to share this article with loved ones who don’t quite understand what living with chronic pain is like for you.
Daily chores turn into all-day chores
The simple things you do to keep your life running, like dishes, grocery shopping, and laundry, are not so simple when you have chronic pain, yet do not have the option of not doing them.
“I feel really embarrassed that basic things are so painful for me and my family doesn’t get it,” says Ami P., 38, of Cheyenne, Wyoming, who has fibromyalgia, rheumatoid arthritis, and chronic fatigue syndrome. “Sorting clothes and getting a fitted sheet on a bed feel like a medieval torture device.”
Picking things up requires some serious calculus
Even little motions, like picking up a bag or turning to reach a lamp switch, require a significant amount of strength, coordination, and balance — things you don’t consider until every little move causes pain, says Matt P., 41, of Minneapolis, Minnesota, who has chronic pain from breaking his back in an accident. “It’s so frustrating to me that things like picking up my son, or getting a pencil I dropped on the floor, or reaching for the gear shift on my motorcycle all are unique challenges now,” he says. “What we think of as simple movements are really quite complex. I always have to consider the safest way to do something before I make a move.”
Hobbies become things you can do in waiting rooms
“I have spent so much time in doctor’s offices and hospitals, which doesn’t leave a lot of time for other things,” says Jennifer A., 48, of Gilbert, Arizona, who has rheumatoid arthritis, fibromyalgia, postural orthostatic tachycardia syndrome (POTS), and chronic fatigue syndrome. She still has things she loves to do but those things have had to change a lot, she says. She’s had to trade long bike rides and volleyball for reading or crocheting. Lots of projects don’t get completed.
Costco trips are an adventure — or impossible
Grocery shopping is a lot more physical than many people realize, particularly if you’re in pain. “I can’t lift heavy things because of my back, so at the store I’m always having to ask for help,” says Laura D., 31, of Burnsville, Minnesota. This also means large bulk items, like 50-pound bags of dog food or cases of canned food, are simply not an option, no matter how great the savings are.
Of course, grocery shopping during the coronavirus pandemic is fraught for everyone — and it’s even more challenging for people who are immunocompromised or have chronic pain and may require more assistance than usual.
There’s no such thing as a comfortable car ride
Being in a car for a long time is hard, making things like road trips extra difficult, Laura says. “I have to get out periodically and walk around so it ends up taking a lot longer,” she says. Gone are the days when she could spontaneously decide to drive to the hills; now even simple trips take extra planning and care.
Driving is a luxury
Being able to drive is a small luxury that many people without chronic pain take for granted, says Jen S., 43, of Portland, Oregon, who has chronic neck pain from a car accident. The pain itself can make it feel impossible to do the basic functions of driving, like turning her head to check a blind spot, but the treatment she takes to ease the pain also prevents her driving. “Not being able to drive, especially at night, really impedes my life,” she says.
Here are more tips for making it easier to drive with chronic pain and arthritis.
Getting dressed is no longer about fashion
Of course, everyone who is sheltering in place may be dressing more casually and comfortably these days, but chronic pain often forces you to change how you approach getting dressed.
From makeup to clothing choices to bags, appearance can be a really important part of your life. It influences not just how others see you but also how you see yourself. Chronic pain can make getting dressed every day a chore and you can forget about trendy eyeliner or delicate jewelry, says Cheri G., 50, of Boulder County, Colorado, who suffers from chronic migraine, fibromyalgia, and impinged nerves in her spine. She used to take a lot of pride in her appearance but now? “I’ve worked it out to where I can do the basics so I look fine,” she says. “I don’t think I look great but it’s fine.”
Your romantic life takes a hit
From first dates to sex to long-term relationships, every aspect of your romantic life is affected by chronic pain. “In the past, my partners have pretty typically mocked me, as I’m a strong, active guy, but they really have no idea how much it flipping hurts to even roll over in bed to kiss them goodnight,” Matt says.
Your spouse goes from lover to caretaker
When one partner experiences chronic pain the other, by default, can slip into a caretaker role rather than a romantic one. This can really change the dynamic of the relationship and you have to work extra hard to keep romance alive, says Laura.
“My husband has a hard time understanding that I don’t want to do certain things because it will cause more pain,” she says. Accepting the physical, emotional, and practical changes from chronic pain can cause a lot of grief, confusion, and resentment in both partners, she adds.
Here, couples share how pain affects marriage and relationships.
You don’t have time for toxic friends
Dealing with toxic relationships is hard regardless of your health status. Add in chronic pain and you’re forced to be selective about who you spend your limited time and energy on, says Jennifer. “The only people that truly understand me are the people who live with me, spend time helping me, or who are suffering like I am,” she says.
Your RSVP to every invitation is ‘maybe’
Chronic pain can change by the hour — one minute you’re feeling great, the next you’re lying in a dark room just trying to breathe — which can make your social life tricky, Jennifer says. “Living with daily pain makes me feel isolated, broken, different, like I am outside the healthy crowd and will never fit in,” she says. “I live a completely different pace of life and that means I often have to cancel plans at the last minute, even ones I was really looking forward to doing.” Yes, this even applies to Zoom and other virtual gatherings during coronavirus quarantine.
Parenting is a whole different experience
Chronic pain can make you tired, short-tempered, impatient, and even absent at crucial moments — all things that can make it harder to be a parent, says Elizabeth P., 36, of Ridgecrest, California, who has rheumatoid arthritis. “My chronic pain has changed my children,” she says. “They recognize when I need my cane and when I need other things. They are young, just 9, 5, and 3 years old, and they’ve trained themselves to be self-sufficient in ways most kids aren’t. They have to be because there are days when I can’t help them.”
Here are tips for making parenting young kids easier when you have pain or arthritis.
You miss out on important milestones
“Chronic migraine attacks cause me great anxiety over everything I’m missing out on because I have to lie alone in a dark, quiet room,” says Jennie B., 41, of Minneapolis, Minnesota. As a mother of two active, young girls she knows she’s missed important events and milestones in their lives, not to mention some of those precious little moments that happen every day. “It breaks my heart to not be there when they need me,” she says.
Health & Wellness
Germs are no joke
“One of the side effects of my medication is it suppresses my immune system so what is a minor cold to most people can lay me out for weeks and increase the pain I’m already in,” Elizabeth says. Pre-coronavirus, this meant taking extra precautions like always carrying hand sanitizer, being extra vigilant about what you eat and drink, and avoiding people who may be sick, even staying home for much of the cold and flu season. Now, it’s a whole new extreme of being careful.
Exhaustion is your baseline
Being in pain is, all on its own, exhausting; and chronic pain can make you chronically exhausted. “I have scoliosis and people don’t understand just how tired chronic pain can make you,” says Laura. “When you’re that tired, every single thing feels harder.”
Sleep is just a dream
“Sleep? What’s that? I think I’ve heard of it, I’d like to try it sometime,” jokes Eric L., 34, of Houston, Texas, who has psoriatic arthritis and chronic fatigue syndrome. “Insomnia is probably the worst part of my chronic pain. I hurt all the time but I can never really rest or recover which just makes me hurt more.”
There isn’t any pain worse than being tired all the time but never being able to sleep, he adds.
Mental Health and Mood
Physical pain takes a mental toll
You can only smile through the pain for so long, Laura says. “My chronic pain makes me depressed, which brings a whole other set of issues to deal with,” she says.
Read more here about depression and arthritis pain.
You get a lot better at setting boundaries
Everyone may have an opinion but you don’t have to listen to it, especially when dealing with chronic pain. “I don’t have time to deal with people who I barely know asking me if I’ve tried X, Y, and Z. I finally started giving myself permission to kindly tell strangers or acquaintances that I don’t want advice and I prefer to talk to my pain specialists about my options,” says Mary R., 56, of Columbus, Ohio, who has chronic kidney disease, arthritis, primary hyperparathyroidism, and diverticulitis. “I have left too many conversations emotionally exhausted and in tears because of the other person’s assumptions or comments.”
Read more about one patient’s perspective on medication and diet shaming people with chronic pain.
You have a shorter fuse
Dealing with an insurance customer service rep will try anyone’s patience but add in chronic pain and you have a recipe for an outburst. “Always being in pain means I’m grouchy a lot, and sometimes for no reason,” Jen says. “I definitely have less patience now.”
Your sympathy for others can be in short supply
When you live with chronic pain, hearing about other people’s problems can either feel overwhelming because you don’t have the resources to support them or frustrating because they complain about things that feel trivial to you. Either way, it’s hard to muster up sympathy for others sometimes, says Angel M., 26, of Toronto, Canada, who has inflammatory arthritis. “I know this makes me sound like a jerk but I can’t listen to my coworker complain about his car troubles or my mom cry about her bunion surgery,” he says. “I understand that it sucks for them and I really want to be sympathetic but the pain kind of shuts off that part of me. I want to care but I just can’t. Like, it’s nothing compared to what I deal with every day.”
Work and Money
Your entire career path can change
Chronic pain and illness can have a huge impact on your work, forcing you to adapt your job to your health needs or even to change careers altogether. “I wish people knew that I do my best every day to be positive and productive, but many days it is just too much and I need to spend the day resting,” says Alison M., 56, of Dansville, New York, who has rheumatoid arthritis and degenerative joint disease.
Here is more information about making it easier to work when you have arthritis or chronic pain.
Your finances get so much more complicated
Chronic physical pain often comes with chronic financial pain as well. Copays for specialists, medication costs, gas and parking for doctor and hospital visits, and lost income due to missed work can drain your bank account fast. “I have constant anxiety about money,” Eric says. “The bills just don’t stop coming. I’m considering applying for disability but that comes with its own financial challenges.”
Identity and Self-Esteem
Chronic pain may change your personality
“Before getting sick I was a pretty happy-go-lucky kinda guy but the pain has worn me down,” says Karl H., 66, of Madison, Wisconsin, who has osteoarthritis and ankylosing spondylitis. “I’m a lot more suspicious of people than I used to be and less willing to try new things.” He adds that the medications he takes have also caused some personality changes, including making him more moody, withdrawn, and aggressive.
Pain changes the way people look at you
Chronic pain is often an invisible disability. Because people can’t see it they may jump to some very wrong — and hurtful — conclusions. “I’ve been called ‘fat,’ ‘messy,’ and ‘lazy’ and accused of faking it,” Cheri says. “But I am not lazy. I work so, so hard, starting with just getting out of bed. I’m tired of being blamed for everything that is not perfect about my life.”
Your illness can become your identity
When you are dealing with pain every minute of every day, it’s all too easy for it to take over your life and become your defining characteristic, says Mary S., 42, of Lodi, California, who has post-chemo neuropathy. “What’s really saved me from this are my close friends. They know my pain isn’t the only thing about me worth knowing and that I want and need my world to be bigger than pain,” she says.
Not Sure What’s Causing Your Pain?
Check out PainSpot, our pain locator tool. Answer a few simple questions about what hurts and discover possible conditions that could be causing it. Start your PainSpot quiz.
Dahlhamer J, et al. Prevalence of Chronic Pain and High-Impact Chronic Pain Among Adults — United States, 2016. U.S. Centers for Disease Control and Prevention Morbidity & Mortality Weekly Report. September 14, 2018. doi: http://dx.doi.org/10.15585/mmwr.mm6736a2.
Interview with Medhat Mikhael, MD, a board-certified pain management doctor specializing in chronic pain at MemorialCare Orange Coast Medical Center in Fountain Valley, California
Pitcher MH, et al. Prevalence and Profile of High-Impact Chronic Pain in the United States. The Journal of Pain. February 2019. doi: https://doi.org/10.1016/j.jpain.2018.07.006.