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25 Unexpected Things That Happen When Chronic Pain Becomes Your ‘Normal’

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When you develop chronic pain, you may not realize just how much your life can change. Due to the constant pain your body is in, your “normal” may look different than it once did.

Most people have a vision for their life, but this vision may have to be altered or even thrown out the window when you have a chronic illness. You have to adjust your life to account for your new symptoms, and this can be a challenge. On top of the “normal” stressors of work and family most people face, those with chronic pain have to deal with the stress of experiencing constant pain.

Mighty contributor Rebekah Dorr explains, “The only thing constant and reliable about our ‘new normal’ is that ‘normal’ is always evolving, sometimes hour by hour.” Whether it’s learning how to determine the severity of your pain, or navigating your daily routine with chronic pain, learning how to live with chronic pain is an adjustment.

Whenever faced with a challenge, like chronic pain, you can discover some unexpected things – sometimes good, sometimes bad. That is why we asked our Mighty community for an unexpected result of chronic pain becoming their “normal.” No matter what surprises you’ve encountered throughout your journey with chronic pain, know you are not alone in facing these ups and downs.

Here is what our community shared with us:

  1. “Not knowing when to actually go to the doctor. Since pain is my normal, and symptoms fluctuate, I don’t know what pain isn’t normal for me.” – Joanne S.
  2. “I stopped complaining about my pain so much. So now people think that I’m fine just because I don’t constantly complain about every single ache and pain.” – Rebecca J.
  3. “Pain insomnia. Sleep is rare!” – Jenny S.
  4. “Other people’s ignorance and reactions. ‘But you don’t look sick, it must be nice to stay at home all day and not have to work, have you tried going gluten free, maybe you shouldn’t take so many medications…etc.’ Losing friends because they can’t rely on you or understand what you’re going through.” – Allison M.
  5. “The mental health aspect that goes with pain. How much people don’t know [goes on] behind closed doors with how much suffering.” – Zoe B.
  6. “The amount of time I spend pretending not to be in pain. Sometimes I just smile out of habit even when I’m on the verge of tears. Learning to fake a convincing smile over the years has been mastered and is so easy now that even the people closest to me have no idea the level of pain I’m in until I eventually burst into tears and finally break.” – Sammi H.
  7. “No one believing that I’m in pain all the time and every single day anymore.” – Paulina A.
  8. “Not knowing whether to disclose your chronic illness to employers or not, or to tell them of your limitations.” – Sarah K.
  9. “Feeling disconnected from friends who I used to be ‘joined at the hip’ with. The chronic pain created this weird vibe where we just don’t understand each other the way we used to. It’s been over eight years since my pain started and I’m still upset over it.” – Alisa E.
  10. “Not realizing you injure yourself because that part always hurts. Not realizing how bad you hurt until you sit down or lay down.” – Mackenzie P.
  11. “Having to learn how much your body’s limitations have dropped. Example: I used to go to the gym, play football and go running which I can no longer do now, so I underestimate my limits to protect from making the pain any worse.” – Matthew K.
  12. “I’m so used to ignoring the lower level pain that it’s hard to identify the location and severity. Finally, I have given up on a 1-10 pain scale all together. I have a four color system for myself. To me, this is normal. The outsider might find it odd that I rate my pain at any given time by these four colors.” – Heather R.
  13. “The fatigue. Man, I could sleep 12 hours every single night on a ‘normal’ day. I am constantly exhausted now, I have forgotten what it feels like to not be.” – Ashley B.
  14. “You completely forget what a good day can feel like and what it means to run with your kids even or go shopping without pain or assistance.” – Kathryn H.
  15. “No idea I had the flu until everyone else in my house dropped like flies. The low grade fever, body aches, malaise, chills are my norm so I didn’t know.” – Britt C.
  16. “How much pain I can tolerate. I get Botox, steroid injections and sometimes trigger point injections and the doctors [and] nurses are impressed that they can do the procedures and I hardly move a bit. My primary care doctor tells me I should be taking my painkillers more than I should. All of my doctors know (any urgent care as well since they can see my medical notes) that if I go in for an urgent appointment I am in that much pain. I am stronger than I ever thought I could be when I first found out about my back problems and my migraines got bad.” – Roxy R.
  17. “The disinterest and apathy of many people around me. Acute illness elicits sympathy and care, when it’s chronic people stop caring and think you can obviously cope.” – Simonne K.
  18. “The pain scale getting thrown out of whack. When I have low pain days constantly that slowly ramp up into a bad flare up it takes my brain a while to realize that ‘oh this is a level of pain that is normally a 9, maybe I should take my meds.’” – Julia M.
  19. “How difficult it is to actually explain my pain to someone (doctor). You would think because you go through it so much, you would have the words.” – Sarah M.
  20. “I go from feeling confident in my ability to mask my symptoms for several days, to breaking down over feeling the weight of the pain, only to piece myself back together and start afresh knowing the same problems could flare again at any moment. And yet, while the symptoms have continued, I can tell that the initial grief and anger over my diagnosis have begun to subside; and, while anxiety still floods my brain frequently, I’ve been able to find the humor in my quirky needs as a semi-able-bodied individual, and joy in just being grateful for the moments that others do show compassion.” – Angela S.
  21. “My new normal is trying to live as ‘normally’ as possible without overdoing it. So I guess from a distance, I look like I am playing the part.” – Alexandria M.
  22. “I’ve become a better advocate for myself. Rather than spending all of my energy fighting something that doesn’t seem to be going away, I can stop pushing myself past my limits, learning to live with it, and learning to accept what my needs actually are instead of what I wish they were.” – Sierra R.
  23. “The absolutely constant judgment because I’m not getting better.” – CeCe H.
  24. “How much I stress over having company and going out to visit others – even my children. I so want to be ‘my normal self’ for everyone – especially my husband – but it is getting so hard to camouflage how bad I am feeling. It is now creating stress that I find so hard to deal with. I was quite a social person, I love being around people.” – Ann A.
  25. “I found patience in becoming a chronic pain patient. The ‘new normal’ I live [in] isn’t a place that my old world always understands. I have to remember that until you get it, you don’t get it! Empathy, compassion, care go a long way and actions speak louder than words any day!” – Victoria P.

Living with chronic pain is not easy – it can take your life and turn it upside down, and inside and out. If you have had to readjust your life to accommodate your new “normal,” know you are not alone, and that you are a warrior.

Originally published: February 27, 2019
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