25 Things Doctors Don't Realize You're Doing Because of Chronic Pain

In a typical doctor’s appointment, you might wait for 45 minutes to talk to your doctor for 15 minutes about all the challenges you’ve been having with your chronic pain in the last six months. That doesn’t leave a lot of time for doctors to really get a sense of what your day-to-day is like and how big of an impact chronic pain really has on your life (especially since, as a recent study found, doctors listen for 11 seconds before interrupting). Your doctor may not realize all the “hacks” you use to minimize pain, how you’ve adjusted your entire schedule around your pain, or the toll your pain has taken on your mental health.

And yet, if doctors did know about these “hidden truths,” perhaps it would help them understand the real-world impact of chronic pain, beyond the tests and diagnoses and research they usually look at. So we asked our chronic pain community to share something they do because of their chronic pain that doctors don’t realize they’re doing. Doctors may not think to ask about these things during an appointment, but these truths are really the key to understanding what chronic pain patients are really going through.

Here’s what our Mighty community told us:

1. “My whole life revolves around my chronic illnesses, either feeling awful and unable to do much or constantly trying to help myself feel better.” — Jordan E.
2. “Put on a smile and fake like I’m doing better than I am. I hate being labeled as ‘medication-seeking’ or being told my pain is psychosomatic and if I just ‘cheered up’ I would feel better. I have never once had a doctor tell me that they can see through the face I put on. Every single one of them falls for it without question. I know I’m only doing myself a disservice, but, after 12 years of the stigma, it’s just easier to hide how bad it really is to avoid all the other issues.” — Caitlin M.
3. “Hardly ever leave my house because I don’t want to take my breakthrough medication or my breakthrough medication isn’t working anymore and I don’t want to look like I’m a drug-seeker.” — Lisbeth-Kieran B.
4. “Obsessively rationing my medication because I’m always convinced tomorrow is going to be worse. Also, suffering in pain for days at home so that I can make sure I have enough medication to be able to work and attend important events. It’s exhausting having to plan my entire life around my meds.” — Krissy F.
5. “I secretly wish they would feel my pain for five minutes.” — Kaymie M.
6. “I have ‘toasted skin syndrome,’ from overuse of heating pad.” — Leah B.
7. “Having anxiety every time I go because I worry that he won’t believe me, or shove the problem off. Also constantly panicking over who or what can help me, and not wanting to realize there is nothing.” — Ashley H.
8. “I have a coccyx pillow, plus a chronic pain first aid kit (filled with Icy Hot, braces, NSAIDs) that stays in my car. I’ve bought three different TENS units and use them multiple times a day. I tell my 4-year-old daughter on an almost daily basis that I can’t do something (usually pick her up) because I’m in too much pain. My doctor has given me valid reasons for not prescribing an opioid, but she doesn’t know how much pain drives and limits my day.” — Melissa M.
9. “Research everything. I should probably have a degree, but they don’t trust me.” — Alane P.
10. “Drink ice water to calm down the flushing of my face and overheating as the pain increases. I always have that, and extra hankerchief to dab sweat off my face.” — Jayne N.
11. “I sleep with ice packs and have to change them four to five times a night. I cannot sleep without ice. On really bad days I have both heat and ice packs… It has been years since I have slept more than three hours.” — Susan D.
12. “Work a full-time job, wear nylons and a dress because I like to feel put together, all the while hurting with every step I take and cry in the work bathroom from pain.” — Ali G.
13. “Feeling the need to over-justify everything because I want to make sure they will believe me.” — Liz Ann T.
14. “That every single decision I make, all day, every day, is dictated by my pain and my efforts to minimize the chance of having it get worse. I’ve cut off my beautiful hair, only wear leggings and soft tops/dresses that are loose fitting, type of shoes I wear, activities, what I eat… literally every decision.” — Jamie S.
15. “This may sound weird, but something I do because of my chronic pain (that doctors don’t realize) is make jokes. For me it’s my pain coping mechanism and to them, it says that I couldn’t be hurting that badly if I’m able to be funny. The truth is that I make people laugh to keep myself from crying. My humor isn’t because I’m feeling well, it’s because I’m truly struggling.” — Julia O.
16. “A million little energy saving tricks, from using a cane to stay upright, to cooking dinner on the floor. Pain sucks at my energy stores constantly so I ration where I can.” — Anna D.
17. “Avoiding hygiene practices at times not because I’m lazy or even because I’m too tired, but because things like standing in the shower under hot or cold water is super painful and scrubbing myself down is even worse… I do all these things every day without making a peep except on my worst days, but I don’t think most people and especially my doctor(s)/dentist/medical professionals realize is how much effort it is to try to do basic, healthy life things… The honest truth is that I do care about my health. It just hurts so much sometimes.” — Thorø L.
18. “Avoiding 95 percent of the social life I had before the pain… Movies? No. Dinner? No. The unpredictability of the pain can make planning difficult, so a lot of people give up asking. I take medication to function… I don’t get any sort of buzz or high. Also, pain meds don’t magically erase all the pain. I don’t want to be a downer if I go out with people just looking to have fun. Plus, I don’t want to ruin someone’s good time if I want to go home. (I don’t drive, so when I go out, I need to commit to the whole event.)” — Angela R.
19. “I suffer horrendous night sweats with my fibromyalgia and cover my pillows with a towel to absorb it. It’s easier to change a towel once or twice during the night than changing all the pillows!” — Jill C.
20. “How much I rest. Because I am able to manage an eventful career, fitness, and education-driven lifestyle they often assume I am doing too much. In reality, lupus has taught me amazing prioritization and multi-tasking skills, along with boldness to ask for help and/or say  ‘no’ to others. So, I am in bed 12+ scheduled hours a day to manage my rest.” — Brandi M.
21. “I push myself through 8s and 9s, trying not to go to the ER. My meds don’t work and my neurologist has given up on me. ERs treat me like a drug addict, so they don’t listen.” — Sara S.
22. “I joke and laugh to try and get through the pain. Unfortunately sometimes it makes them not believe me when I tell them how much pain I’m in because I’m able to still laugh and smile. I grit my teeth without anyone noticing, including myself and it in turn makes the pain even worse. I suffer without truly letting on how bad I’m hurting. I try not to let it show but it’s difficult when you have little grunts or yelps out of pain.” — Savannah E.
23. “I hide my emotions… bottle them up I guess and only let them out when it gets too much. Doctors don’t realize this. I saw a new doctor and got a query diagnosis. I left the room at the end of the appointment and was only 10 feet away from his room and burst into tears because of emotions.” — Abi S.
24. “Doctors didn’t realize that I clench down on my tongue often when my pain is so severe. Due to the marks I left on my tongue I was sent to an oral surgeon, for five months, to rule out tongue cancer. The oral surgeon couldn’t imagine someone clenching down so hard because physical pain was that bad.” — Denise E.
25. “While many doctors’ first assumption is that I am exacerbating my pain by dwelling on it too much, what they don’t realize is that I spend almost every waking minute trying to ignore, distract from, belittle and push through the pain that is coursing through my body. I’m not choosing this; I’m simply looking for answers and methods of relief.” — Angela S.