By Erin Migdol
Every September during Pain Awareness Month, chronic painpatients and advocates are urged to reach out to their friends, representatives and the medical community to raise the visibility of issues that affect their quality of life. Even among doctors, chronic pain isn’t always well-understood, and the average person typically doesn’t realize how chronic pain can affect a patient’s mental health, career, family, and physical abilities. But just because chronic pain is often invisible doesn’t mean it’s not there or life-altering.
We asked our Mighty community to share what they want people to learn about chronic pain during this year’s Pain Awareness Month. In this upcoming year, chronic pain patients will continue to be in the crossfire of conversations about the opioid crisis, medical marijuana and health insurance. Educating people about the reality of chronic pain, from a patient perspective, is more crucial than ever.
Here’s what our community told us:
1. “My chronic pain affects me physically, mentally, socially, economically, emotionally. It touches every aspect of my life.” — Arun D.
2. “Chronic pain is exhausting! Our bodies work overtime just to ‘function’ so bear with us if we need time to rest.” — Charlotte R.
3. “Just because I am capable of doing something one day does not mean I will be able to do that same thing the next day. I never know how much I can do on a day-to-day basis.” — April Y.
4. “Just because ‘I look normal’ doesn’t mean I’m not in pain. People who have been in pain every day for years get used to it. That’s not saying we don’t hurt or lose ‘spoons‘ because of this, but we’ve learned to enjoy life despite the pain. Along with that, knowing that we are capable of good days and the smiles we share can be genuine. Honestly, it just takes a lot of communication with the people around you.” — Heather H.
5. “People with chronic pain are not drug seekers, we are not lazy, and we are not looking for attention. Pain affects every part of our lives including relationships, financial, and emotional. We hide a lot of our pain and push ourselves to do things that make us painful. Living with chronic pain is very hard on us.” — Becky B.
6. “Pain is lonely and isolating. We are not drug seekers. We want relief. Judging us only makes us feel worse and even more lonely and depressed.” — Taylor Marie S.
7. “There are days that you see me where I haven’t slept a wink because of the pain, but I don’t tell you.” — N.A. L.
8. “We try so hard to do what we can, [I ask you] not to be too hard on us. We aren’t lazy or looking for handouts. We are looking for cures and support.” — Kayla J.
9. “Opioids are a legitimate treatment, and not everyone who uses them is addicted. There is a difference from being dependent on a medication to function and being addicted. This crackdown on the opioid ‘crisis’ is hurting chronic pain patients by making doctors afraid to treat their patients. And if you look at the statistics, you find that less than 20 percent of people who are prescribed opioids are addicted.” — Sarah H.
10. “Pain affects everyone differently. Even mild constant pain can take a toll on someone. It needs careful planning for going out like parking lots nearby and so on.” — Sia S.
11. “Being tired because of pain and being tired because of work are two very different things. Pain tired doesn’t go away with sleep.” — Courtney A.
12. “Chronic pain is like someone tapping on your shoulder all day and night all the time. It’s hard to ignore and live as if it wasn’t there.” — Lisa T.
13. “I want people to know that chronic pain can affect anyone! It can be the girl you sit beside in school, the young man who smiled at you in the shop or the old lady who lives on your road. It can affect anyone no matter what age, gender or race you are. It doesn’t care whether you’re a young fit athlete or an older person who’s now retired!” — Mary N.
14. “We shouldn’t be made to feel we have to prove our pain. I think we have enough going on, and who would lie about being in pain 24/7?” — Danielle R.
15. “It comes and goes in massive waves. I never know when it’s going to hit or in what amounts it would be in. Could be small like a trickle of rain or it could be a devastating hurricane that destroys everything.” — CK D.
16. “Chronic pain is not just physical. It can affect mentally and emotionally. Just because there are good days it doesn’t mean the pain has gone or stopped. Simple everyday tasks/activities can become hard.” — Leya A.
17. “Just because I’m smiling, I have makeup on and showed up to church or an activity doesn’t mean I’m not in pain or feeling bad. And when I’m having a ‘better’ day, I’m not symptom or pain-free, I’m just having a better managed day with my illness. I wish people would understand the concept that chronic means ongoing; it’s not the same as getting over a cold.” — Elle M.
18. “Every day is a recovery from the previous day. But you never really reach it, because you’re in pain that day, too. You’re in pain every day. You’re fighting your body 24/7. People don’t realize just how tiring it is to live like that. Your brain changes and almost accepts that being in pain 24/7 is normal. Sometimes I almost forget I am hurting because it’s just the default now.” — Emmy R.
19. “My pain is always, and my smile is temporary.” — Timothy R.