Know People with Chronic Pain? 17 Crucial Things They Wish You Knew

Know People with Chronic Pain? 17 Crucial Things They Wish You Knew

People with Chronic Pain Are Like Spiderman

People with chronic pain are like Spiderman. Hear me out now! 

Spiderman fights crime all night. He carries the stress of protecting 8.5 million New Yorkers on his shoulders…and his friends have no idea. They ask him why he’s so tired, or keeps disappearing, and lovingly encourage him to get his act together.

Unlike Spiderman, people with chronic pain are not rare. In fact, 100 million people suffer from chronic pain in the United States alone, and 1.5 billion worldwide! The chances that you know one of them are pretty darn good.

So what is chronic pain? It’s persistent pain (usually low back, headache, arthritic, or nerve pain) that lasts for weeks, months, or even years. It can be set off by an injury or illness, or can come out of nowhere, with no clear cause or explanation. 

The invisible nature of chronic pain means that sufferers often experience their pain being downplayed, or their response to pain misinterpreted, by others.

So what do people with chronic pain want others to know? Well, I asked! And here’s what they had to say:

How People with Chronic Pain Feel

  1. I experience some level of pain every day. I don’t want to be that person that constantly complains, so I often don’t mention it. Simply being aware and supportive of my condition, even when I don’t bring it up, is huge!
  1. Chronic pain is exhausting. Think of how tired you’ve felt after fighting off the flu. Now imagine feeling like that every day for years. On top of that, chronic pain makes it difficult to fall and stay asleep. There goes your chance of waking up refreshed tomorrow morning.
  1. My pain affects my mood. Most people aren’t at their happiest when they’re icing a bad injury at home. Imagine if the injury never went away. My pain may cause me to feel cranky, more easily irritated, or even tearful for no apparent reason.
  1. Pain makes it difficult to focus. I’m sincerely trying to concentrate on our conversation, but my nagging pain just keeps distracting me. I have to work hard every day just to try to live a normal life.
  1. I’ve seen 10 million doctors, in every area of speciality. It’s beyond frustrating when you’re not completely sure what’s at the root of your pain. I hate when doctors just throw pain meds at me, assuming that’s what I want from them. What I want is answers; I want to fix this so that I can live a normal life again.
  1. I often beat myself up over my chronic pain. I’m acutely aware that my pain affects not only my life, but the lives of my family and friends as well. I feel terrible for missing family outings, birthday parties, date nights, and church services. I often feel like I’m letting everyone down, and am self-conscious of how others receive and understand my condition.
  1. It’s hard for me to feel so weak and dependent on others. I miss my independence, and hate feeling as if I’m inconveniencing others. I hate knowing that my pain is affecting my loved ones, and would much rather be able to do those things myself.
  1. Everyday tasks can be challenging for me. Lifting my child, tying my shoes, picking something off the floor, or sitting in a car, can cause excruciating pain that lasts for hours, days, or weeks.
  1. I do a lot of things at a pain level that other people wouldn’t consider moving at. I do that because if I waited for the pain to subside, I would never leave my house.

How to Help People with Chronic Pain

  1. I appreciate when you attempt to understand how I must feel, and show me some compassion.
  1. I’m not always looking for suggestions. Sometimes I just want to vent because I’m tired and frustrated. Don’t feel like you have to come up with the solution to every health concern I voice.
  1. Please just help me. You can ask me what I need, but I may not know, or may feel too overwhelmed to pinpoint a specific task. If that’s the case, do something anyway! Cook dinner. Massage my neck. I don’t like asking people for help. I love it when my family and friends notice that I need help, without my having to say a word, and just take something off of my plate.
  1. Keep inviting me. I love to hang out, but am often physically and mentally unable to do the things that I want. Continuing to invite me, even if it seems pointless, shows me that you still care about and haven’t given up on me. Please don’t take it personally if/when I cancel on our plans. I’m trying my best!

How  Not  to Help People with Chronic Pain

  1. Please don’t act as if I’m just being lazy or negative on my hard days. Sometimes I simply cannot do something. It’s not physically possible for me, no matter how simple it seems to you. And sometimes my illness drains me of every single drop of energy I have. And then one more.
  1. Please don’t tell me to suck it up, man up, get over it, or any other variation of this. I wish that I could just “get over it”, that I could enjoy just one day without pain. “Encouragement” like this just makes me feel misunderstood and unsupported.
  1. Please don’t fault me for leaving some things undone. If I’m physically and mentally capable of doing just one thing today, I may choose to spend time with friends or family, instead of using that energy to clean the house or finally finish that home project. I’m trying to focus my available energy on what I feel is most important.
  1. Please don’t suggest essential oils, marijuana, acupuncture, exercise, vitamins, supplements, or any other natural remedies unless you are very close to me and familiar with my medical history. I know that you’re psyched about xyz and want to share the good news with the world, but it can come across as insincere and insensitive unless we have a close relationship. Also, please phrase your ideas as suggestions, rather than demands.

Wrap It Up

With 1.5 billion people with chronic pain worldwide, the chances are really good that you personally know several! By trying to understand how they feel and are affected, and the kind of support they so desperately need, you can make the world that much brighter for those living in the dark.

Don’t make Spiderman feel bad for being so tired. He’s just slinging webs the best way he knows how. And he could use all of the support he can get.

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4 Comments

  1. Thank you for sharing this post! It’s so accurate, especially #17. That’s one of the biggest reasons I don’t talk about my illness, (Fibro). Sometimes I just need someone to talk to about it, especially when I’m having a flare. The pain gets so bad that it consumes my mind but I don’t need or want anyone to try to “fix” it or me. That’s not to say I don’t want to feel better! Because I’d love nothing more! But, like most of us, I know this illness. I know what I’ve tried. I know what’s “helped” & what hasn’t. So when/if I talk about how I’m feeling & I get one suggestion after another… Ie., see Dr. so & so, essential oils are what you need, or have you been tested for this or that? I instantly regret bringing it up. Its exhausting to say “oh, that sounds great” or “thank you for suggesting that”.
    All I really want is for some to listen for a few minutes, show some understanding & compassion. Don’t question me, don’t suggest anything, just listen.

    1. Thank you so much for sharing! I’m sorry to hear that you have experience in that area.

      I experience it second-hand through my husband. He’s suffered from chronic pain for the last three years and we have yet to pinpoint the exact cause, despite countless doctor and specialist visits, imaging, testing, etc. Most people’s first reaction when he mentions his pain/discomfort is to suggest a next step. But the way it’s usually presented is as if he’s never considered it (We’ve considered 10 million possible causes and treatments.), and usually very upbeat, like, “Healing is so easy and just around the corner!” It often leaves him feeling more misunderstood and alone, because it minimizes what he lives with every day.

      I hope that you find healing and rest from your fibro, and some good friends to lend an ear!

  2. Thank you so very much for posting this!! It literally puts all the thoughts concerning my chronic pain (fibromyalgia), from inside my mind, onto black and white. I oftentimes have a hard time expressing my feelings but this expressed them all!! I’m definitely pinned this post and will be sharing in the future. I wish you and your husband all the best.

    1. I’m so glad this resonated with you! <3 Thank you so much for the well wishes and the same to you! Fibromyalgia fighters are some of the strongest people I know!

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