By Erin Migdol
When pain crosses over from “acute” to “chronic” and it becomes an everyday part of your life, you may start to develop certain habits or coping techniques. Even the smallest bit of relief can be helpful when your pain is constant and “normal,” as Mighty contributor Amalia Miller described it so insightfully, so you might find yourself doing things like adjusting your body movements or changing your schedule to accommodate your pain. But because pain is often invisible, other people might not even realize you’re doing these things, or not realize you’re doing them because of your chronic pain.
We wanted to find out what people in our chronic pain community are doing to cope with their pain, to hopefully help increase awareness and understanding of the different ways chronic pain can manifest. Below, you’ll find what our Mighty community said when we asked what’s something they do that people don’t realize they’re doing because of their pain. If you recognize your own behaviors in this list, know that you’re not alone — and if you have a loved one with chronic pain, hopefully this will help you understand and support them better.
Here’s what our community told us:
1. Changing Your Breathing
“When my pain is especially bad, I catch myself holding my breath without realizing I’m doing it. When I finally get my breathing under control, I catch myself holding my breath again. I think my subconscious takes over and if I stop breathing it will also stop my pain.” — Lori S.
“Deep breathing. It’s not from anger or frustration with anyone, it’s trying to keep from screaming or crying at the searing hot pokers that are coursing through every joint and every bone in my body.” — Katrina G.
“Sighing. And the bad part about that is that it’s easily misinterpreted so I probably seem like a jerk sometimes to people who don’t know what’s going on. Like if I’m out grocery shopping, by the time that I get to the register, I’m in pain, exhausted, have tachycardia, I’m short of breath, etc., and I often sigh (unintentionally), as I’m trying to catch my breath, get a rest, and tolerate the pain. But it can come across as if I’m annoyed with the cashier or something and sighing because they’re taking too long or whatever.” —Aliza G.
2. Staying Up All Night
“Staying up all night. I don’t do it because I’m doing something fun, it’s because painsomnia is real, and sometimes I’ll have to change clothes two or three times through the night to keep my skin from feeling like it’s on fire because it’s too sensitive to the fabric.” — Birch C.
“Rarely sleeping. I go to bed early and might be asleep at 9, but I hear you. I see the lights. I hear the dog, I know you blew out the candles. I see the clock at midnight. 1, 2, 3, 4 a.m. I dread every night because I know it’s going to hurt.” — Jenny S.
3. Being Angry, Anxious or Irritable
“I get pretty snippy. I try really hard not to, but the pain becomes pretty immense, and I am trying to fight that down while trying to do my job and parent, and it gets a bit overwhelming. I keep myself in check, but sometimes my snarkiness comes out or I seem a bit abrasive.” — Jennifer C.
“Acting impatient, moody and anxious out of the blue. It’s very hard to deal with chronic pain flares while sorting other interpersonal issues out at the same time and also having an anxiety disorder. I finally got my mom to understand what it is that’s going on when I’m like that and that it’s difficult to help sometimes because of my anxiety. Everyone else doesn’t really get it and just escalate things.” — Melissa H.
4. Saying “I’m Fine” (Even If You’re Not)
“Not telling the truth. When people ask if I’m OK I always say yeah I’n fine when I’m far from fine. If I told the truth I don’t think people would understand and I hate feeling like I’m depressing people.” — Hayley N.
“Saying I’m OK, even though the pain is really bad. I downplay how I’m feeling a lot.” — Brittany J.
“I say several times a day to others I am all right. Mainly say it to myself when I am alone. One morning one of my parrots heard me come in to the room and she started repeating ‘I am all right, I am all right.’ She repeated it about a dozen times and I had never heard her say it before. I uncovered her cage and she had fallen from her perch and injured herself. Made me realize just how often I say it when I am not feeling well.” — Roberta A.
5. Constantly Moving and Fidgeting
“If I’m standing I have to constantly move or walk. And I look like I’m always doing some squats if I’m standing in a line because my legs go numb.” — Ashlee E.
“I rock my body from side to side while standing, sitting or laying down because of the awful pain in my lower back and hips. People think I’m just impatient, fidgety or irritated because I’m never just standing, sitting or laying still. I constantly have to readjust my body because of the pain.” — Sierra B.
“I twiddle my thumbs a lot. While some do it because they’re bored, I’ve come to realize that I do it because it’s relaxing and soothing to me. I know people look down on it when they see it but just that little action is calming for me when I’m in pain.” — Molly E.
“Rubbing the back of my neck, or my hands/wrists. Also bouncing my leg because it’s a physical reaction manifesting from my anxiety. Playing with any jewelry I have on (usually my MedicAlert bracelet) to help keep me calm.” — Janice M.
6. Holding Painful Parts of Your Body
“I don’t often realize it myself but when my pain is spiking I will apply pressure to my upper abdomen (or into the left of my pelvis if it is due to ovarian cysts) with my hand and will stay like that until pain meds kick in, if they kick in.” — Sarah S.
“I constantly cross my arms across my stomach because I am in pain. It looks like I am being defensive but I am really just holding my stomach.” — Samantha M.
7. Difficulty Concentrating
“I don’t pay attention. Often I am completely distracted by pain and have no idea what is being said to or around me. I zone out. Focus is one of my major hurdles and I cannot control when pain hits hard enough to distract. Sometimes it’s seconds, sometimes it’s hours. There’s no pattern.” — Krista I.
“Fighting to concentrate on a simple task. When the pain becomes full-scale it makes it difficult to focus on things like reading, walking, or even having a conversation.” — Tiffany T.
“Asking people to repeat themselves multiple times because pain creates a lot of ‘background noise’ in my head. Or asking people to turn the TV or radio down or to speak quietly because it’s like there’s not enough space in my head for the pain and everything going on around me. This also makes me easily overwhelmed and snippy with others.” — Stephane M.
8. Being Quiet
“Not talking because I am trying to work through the pain. I guess I worry that people think I’m angry when I do that.” — Joanne S.
“I don’t talk. Especially when I have to go to work on a pain day, I barely talk to anyone. Back in school, I had days where I wouldn’t talk to anyone at all. I have to drag myself out there and anything apart from that is just too exhausting.” — Malina M.
9. Making Plans Around Your Pain
“Trying to plan my activity in such a way that no one has to see me when I’m experiencing a pain spike.” — Erik E.
“Scheduling things in clusters. It’s easier for me to knock out appointments and errands all at one time and leave the rest of my day for rest.” — Jessie S.
“Setting my alarm 45 minutes earlier than I need to get up. This is so I have time to take my pain meds and let them work before I can get out of bed and start my day.” — Janey G.
10. Not Being Able to Remember Things
“Thinking ‘Did I take my painkillers after lunch? Or was that yesterday? And which painkiller was it again?’” — Gabbie J.
“Not recognizing people when I have known them for years … especially when they are out of context. I still don’t recognize my one yoga teacher I see almost every week for six months.” — Tamara W.
11. Always Looking for a Place to Sit
“Constantly finding a place to sit. My legs hurt so bad that standing is a torturous endeavor.” — Elizabeth S.
“I show up with a smile on my face and can’t wait till I find a comfortable chair. I smile, I laugh, although sometimes I’m in so much pain that I feel my body is on fire.” — Joanne C.
12. Choosing Clothes That Are Comfortable for Your Pain
“Constantly wearing sunglasses, everywhere, even indoors. Not only to help prevent chronic excruciating migraines, but I have pretty regular headaches. Ironically, these headaches are caused by eye pain that happens to be a side effect of my migrainemedication! They are far less painful than the alternative though so it’s worth it.” — Maureen D.
“I tend to go out looking like a bum because the pain is just too bad to wear ‘normal’ clothes. Some people don’t understand why I don’t dress up with them and then I just cancel plans because I want to spare the judgment.” — Lyssa A.
“Wearing sunglasses when not really necessary… I get such horrible headaches and vertigo and this helps so much.” — Corinna T.
13. Using TV or Electronics to Distract From Pain
“Having my TV on all the time or my phone doing something to distract me a little from the pain.” — Josephine W.
“I have earbuds in almost all day every day, music and shows give me enough distraction to get through the pain.” — Emily T.
14. Carrying Emergency Supplies With You Everywhere
“Carrying a rucksack with me at all times. This rucksack contains spare clothes, baby wipes and carrier bags in case of accidents (darn Crohn’s disease) as well as a sports drink and [medication] to help stop dehydration. Also I pack some slippers, pain meds and snacks. It’s easier and comfier to walk in slippers around the supermarket (even work) when it’s not too busy. I struggle with meals, so I snack throughout the day.” — Charlette A.
15. Thanking Loved Ones
“I regularly tell my friends, family members and hubby how much I love them, that they are wonderful people and that I am thankful for their support and couldn’t make it without them… because it’s true. Without their support, understanding and love I would have given up long ago, because a lot of times the pain becomes just too much. More importantly with this I remind myself that I am loved and wanted and that I would be missed.” — Marita K.