If an estimated 50 million Americans live with chronic pain, and each one has just 1 person who cares about them, 100 million Americans are affected by chronic pain. That’s nearly a third of the population! Today I want to talk to the people who don’t have chronic pain but love someone with it. I’m going to give you some facts you should know, talk about what you should know about living with chronic pain, and how you can help people with chronic pain.

You can’t know what it’s like living with chronic pain unless you have it, and understanding what it’s like living with chronic pain dramatically affects how you treat someone who lives with it. I hope this post helps you!

I am not a medical professional. I provide sources for all of my facts. 

What’s Chronic Pain? What You Should Know If You Love Someone With It

Before we talk about what you should know as the loved one of a chronic pain patient, let’s talk about important information you need to know to better understand chronic pain.

What is chronic pain? 

According to the Cleveland Clinic, chronic pain is pain that “lasts for over three months” (x). It does not need to be in pain for every single moment for it to count; some people are in pain constantly while others are in pain every day but not necessarily every minute of every day.  

I personally am in pain all the time, but I also have so many parts of my body affected that I don’t experience pain in every part of my body or every joint every day. My wrist might hurt one day and not the next, but on that next day I have pain in a finger or my elbow instead (or even in addition). 

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Chronic Pain Statistics 

The CDC estimates that 50.5 million Americans have chronic pain, which is 20.4%, and 8 million Americans have high-impact chronic pain (x). (The CDC defines high-impact chronic pain as “chronic pain that frequently limits life or work activities”.)

Here are some other key demographics you should know. 

Of this 50 million people, approximately 56% are female and 44% are male (x). These were the only 2 sexes included, so I don’t know what the breakdown is by gender or how including intersex people would adjust these numbers.

If I were to believe this study, then 72% are white and non-Hispanic, 11.7% are Hispanic, 10.3% are Black, and 6% are “other” (x). 

Check out my tips for describing your pain to doctors here.

I phrase it this way because studies show that there is a significant amount of racism in medicine. For example, “half of a sample of white medical students and residents endorsed these beliefs [that Black people feel less pain than white people do]” (x). Unsurprisingly, “participants who endorsed these beliefs rated the black (vs. white) patient’s pain as lower and made less accurate treatment recommendations” (x). Given this, how can we trust the breakdown provided by the CDC, as patients must be believed to be included? 

51.5% of chronic pain patients are not currently employed but were previously, while 44.2% are currently employed, and 4.3% are not employed and never have been (x).

There are some other statistics that are of interest, such as the fact that 87% of chronic pain patients are NOT veterans (x). Additionally, 76.8% of patients live in urban areas while 23.2% live in rural areas (x). 

What Is Considered a Chronic Illness? And Other Chronic Illness Basics 

Is chronic pain a disability? 

According to a variety of definitions of “disability,” yes. 

The medical model of disability defines it as “an illness or disability as the result of a physical condition, which is intrinsic to the individual (it is part of that individual’s own body) and which may reduce the individual’s quality of life and cause clear disadvantages to the individual” (x). 

So according to the medical model, if your chronic pain reduces your quality of life and causes clear disadvantages to you, then your chronic pain is a disability.

The social model of disability “identifies systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) as contributory factors in disabling people” (x).

So according to the social model, if general society excludes you purposely or inadvertently due to your chronic pain, or society has negative attitudes towards you due to your chronic pain, then your chronic pain is a disability.

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Another model of disability is seen in the Americans with Disabilities Act. How does the ADA qualify disability? 

According to the department of Health and Human Services, “An individual with a disability is a person who has a physical or mental impairment that substantially limits major life activities; has a record of such an impairment; or is regarded as having such an impairment” (x). 

“Major life activities” means “caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning and working” (x). So if your chronic pain limits how much you can work, you’re disabled. If it limits taking care of yourself or living independently, you’re disabled.

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Living with Chronic Pain: What You Should Know

You can know all of those things above, but it’s not the same as knowing what living with chronic pain is actually like. To help you get a better idea of what your loved one’s life is like, I want to share what you should know about living with chronic pain, not “just” statistics. 

Living with pain is not straight forward – Every day is not the same. One day (or hour, even) we’re walking down the street completely fine, and the next we can hardly get out of bed. Sometimes we know exactly why it happens, and others we have no idea.

I’ve been in pain since 2001, so I have over 20 years experience of living with chronic pain. But I still mess up. I still do things that later cause me pain, and I’ll say, “You’d think I’d know better by now,” or, “I made such a rookie mistake.” And yes, sometimes I’ll do things fully knowing that I’ll pay for it later. I’m a human, and it’s frustrating to always have to take my body into consideration. And sometimes it’s more important to me emotionally that I do something than avoid it because of my body.

It’s also important to remember that while there are plenty of people who have chronic pain because of an accident or an incident, there are also a lot of illnesses that can cause chronic pain. My pain generally fluctuates because of an illness; it’s not that I had an injury in 2001 and my pain has essentially been the same for over 20 years. 

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Pain affects how much energy we have in a day – It takes a lot of energy to be in pain all the time, and doing normal things takes more out of us than it does for a healthy person. And again, there are a lot of people whose pain comes from an illness. Fatigue is a symptom of essentially every chronic illness I’ve ever heard of.

For example, my chronic joint pain comes from rheumatoid arthritis. RA is an autoimmune disease, which is when the immune system attacks healthy parts of the body. I have an extremely vigilant immune system that thinks it has to attack my body. Is it any wonder that I have fatigue?

There’s also physical fatigue and emotional fatigue. It’s emotionally exhausting to be constantly in pain, especially for someone who is in pain “before their time”. For example, ten year olds are supposed to have lots of energy. I, however, was in constant pain and was emotionally exhausted by having to prove that I was telling the truth and not trying to get out of school. 

(Which always makes me laugh because I was and still am a giant nerd. I made my mom give me homework over the summer. Why would I want to get out of school? But I digress.)

Fatigue is more than “just being tired”. Fatigue doesn’t really come from not sleeping enough. I mean, I have to sleep a minimum of 6 (if not the ideal 7-9) hours a night or else my pain is significantly worse. If I sleep 9 hours and am still yawning, that’s not needing more sleep. That’s fatigue.

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It can be incredibly upsetting how much our lives are not like others’ – When I was in college, most of my friends went out at least once a weekend, if not twice. I went out once a month, and even less frequently some semesters. I couldn’t drink for most of my college career, and can’t now, either. I never go out now, and I usually don’t go to events that start after 4. 

I lived with my parents for 7 years (after my body kind of gave up because I overdid it) not just because I had student loans but also because I wasn’t healthy enough to live alone. If I hadn’t added Plaquenil to my medication regimen, I don’t know that I ever would have lived independently. 

My life is very different from other people’s lives my age, and I can be very insecure about that.

That’s not to say that every single chronic pain patient feels that way, but many of us do. Especially when our lives are different from our peers. (I mean, when 50 million Americans live with chronic pain, there are chronic pain patients whose lives are very similar to their peers.) 

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How To Help People in Your Life with Chronic Pain

Now that we’ve talked about who has chronic pain and what chronic pain is like, let’s talk about things you can do to help chronic pain patients in your life.

Keep inviting us to things – Even if we can’t go, and you know we can’t go, we like to be invited. And you never know what we will be able to attend after all! 

Plus, as I mentioned, it can be upsetting to have a very different life than your peers. I’m sure I’m not alone in this, but I am always worried on some level that the people in my life consider me a burden. I’m fully aware that this is not necessarily true, but it’s a worry. 

If someone in your life has chronic pain and often declines invitations, and there’s no other indication that they don’t like you, keep inviting them to things. If they decline invitations that are in the evening but accept invitations in the mornings (or vice versa), then they probably have worse symptoms at the time and you should invite them to things that take place when they are better.   

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Offer to come over and just watch Netflix (or whatever your loved one’s equivalent is) – Offering to do something that is within our ability not only enables you to hang out with us without feeling the pressure to be “on,” but it also shows us that you’re actually interested in being in our lives. 

Think about it this way: if you hate hiking and a friend only suggests you hang out by hiking, are you going to feel like they actually want to hang out with you? Or are you going to feel that they are just offering something for the sake of offering it, or even that they just don’t care about you?

The same principle applies here. 

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Offer specific ways to help us (make dinner, run errands, etc.) – If you just say, “Let me know how I can help!” we may feel uncomfortable asking for things. Offering specific ways you can help makes it more likely for us to accept your help.

For example, if someone has been having a particularly hard time, you could say, “I know things have been difficult recently. Would it be helpful if I brought over some meals for your freezer so you don’t have to cook?”  

Additionally, if you live in an area where you have to drive to get to the pharmacy, you could ask, “Would you like me to pick up your prescription(s) for you?” Driving has long been a problem for me, and when I’ve lived in Maine, driving is the only way to get medications. 

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Make sure you say that we’re not a burden – I know this seems unnecessary, but it is so easy for us to think that we’re a burden on you if you don’t say it every now and then.

I’m not saying that you should say “You’re not a burden” without any context. Honestly, that might make them think that they are a burden. But if someone is upset about life with chronic pain in general and it seems like they might think they are a burden, then tell them. In that case, saying “You know you’re not a burden, right?” can be very helpful.

But it’s possible to say “You’re not a burden” without saying those words. 

Don’t seem annoyed if we need help or adjustments. 

Take our needs into consideration without us asking for you to do so. 

Don’t wait for us to ask for help to offer it. 

If someone has food intolerances, look at the menu of a possible restaurant before suggesting that restaurant. I hate having to be the one to go “Actually, I can’t eat there” when everyone else is excited about going to that restaurant. 

Look at the seating opportunities ahead of time. Is it easy to sit if we need it? Are wheelchairs available for those who need it, and if so, are you willing to push us? 

If the chronic pain patient in your life already uses a mobility device like a wheelchair or rollator, check out the accessibility. If a place has even one step in the “accessible” entrance, it’s not accessible.  

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Tell us that you love us, verbally and with your actions – Because everyone likes to hear this. Because you don’t want to forget to say this when you’re helping us with health things. And because, at the end of the day, we are your loved one.  

As you may or may not be able to tell from this post, I’m rather insecure when it comes to my relationships and my health. Oh, sure, I know a lot and I stand my ground, not doing things that I know will hurt me. But at the end of the day, I can’t logic myself out of feeling like I’m a burden on some level. It’s a thing I’m working on, and I know that it isn’t necessarily true, but I still feel that way. 

And I’m not alone in that. 

So make sure that you tell us you care about us, but also do the things that show us that’s true.

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What else would you like to know about living with chronic pain if you don’t have it? 

Like this post? Share it! Then check out: 

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