15 Things People With Chronic Pain Want You To Know

There are lots of different kinds of chronic pain, and lots of conditions that cause them. If you know anyone with migraines, fibromyalgia, IBS, or any type of chronic pain, here are some things they might experience or relate to. The understanding of friends and family can make a world of difference.

As a person who lives with chronic pain…

1. My pain may be caused by a medical condition, or it may be that my brain distorts how I receive pain. It’s been years and my doctors are still not sure; people with chronic pain have varied causes, symptoms, and experiences. This can be difficult to explain to others.

2. It can be frustrating to feel like people don’t take my condition seriously, because nothing is “really wrong” with me. I’m not dying. I don’t have an obvious physical disability, I can’t name a disease others will recognize, my diagnosis is pretty vague and unrecognizable to most people, and a lot of the time I am perfectly fine.

3. I am often fine, but I constantly worry that pain will creep up on me—partly because I dread the pain, and partly because it interrupts my life.

4. I am embarrassed by my chronic pain. I worry that people think I am a wuss or that I’m melodramatic.

5. Sometimes I’m in a lot of pain. It’s not a normal stomachache or slight headache. It is severe, often excruciating pain that sometimes renders me unable to move. Please don’t trivialize it. Tylenol will not fix this pain.

6. Sometimes sleep is the only way out—medicine doesn’t fix everything, and research for quality of life conditions are not always a top priority when some people are dying of other medical conditions. I understand this, please don’t lecture me about the lesser importance of my condition.

7. Sometimes I go to sleep involuntarily when the pain is so great that my body doesn’t know how else to escape it. Sometimes I fall asleep in odd places when I am in great pain—this is one reason I like to stay home when I have pain.

8. Sometimes I have let down friends—not showing up when we have plans, missing something important. This is one of the worst parts, especially when the reason I miss something is that I went to sleep. I worry that those friends will not understand that it was an accident, unavoidable. I really hate letting them down.

9. I worry that because of my chronic pain people won’t want to deal with me, be involved with me, or be my friend. I am too much trouble, too much drama.

10. I worry that I seem or am too concerned about myself. I need to take care of certain things to avoid triggering my pain, and those things may seem trivial or less important to others. Missing a few hours of sleep or eating late can be a minor inconvenience to others—no one likes to be tired—but for me, a couple days of that can trigger severe pain.

11. I worry that people think I abuse my diagnosis—that sometimes I am not actually in pain when I say I am (Although it would be so unpleasant to fake this experience I’m not sure why anyone would).

12. I sometimes get behind in school or work when pain prevents me from going to class.

13. Often I experience pain in phases—sometimes the phases are a few days, sometimes they last a few weeks. In these cases, I can get very behind in school or work.

14. It is hard to explain to my professors and bosses why I am absent. I worry that they will not understand and my grade, employment status, or reputation will be affected. I hate doing a poor job at anything I’m involved in.

15. The best thing anyone can do to help me is to be understanding of these things. It means the world.