One of the most difficult aspects of living with pain is that people doubt you. You might look fine on the outside, but feel tremendous pain in your body—a pain that may be invisible to others.
When someone doesn't believe our pain, it makes us feel even worse.
Anyone who has not experienced chronic pain cannot fully understand what it is like. Even if we look healthy. Even if we have a smile on. We may still be feeling terrible inside.
In the old days, if doctors couldn't find the cause of a person's pain, they assumed it was just "all in their head." We now know that all pain has a real biological cause, even if the doctor can't see it.
These discoveries show how changes in the nervous system create different types of pain.
With this new information, there is finally scientific validation for people who suffer with difficult to explain pain.
“It’s difficult to get better and move on when you have to constantly prove that you’re in pain in order to receive care or understanding.
It’s difficult to get better and move on when just trying to live a meaningful life in the presence of pain can be used against you to downplay or dismiss your condition, or deny you treatment.
One of the interactions that contributed to my own downward spiral was being accused of malingering by someone I had trusted and who I had considered a friend.
One of the ‘proofs’ laid against me was Facebook. Another was a work party I attended for less than an hour.
It’s a problem that too many people in pain face. Any effort to have some semblance of a life, to find some joy, some relief from the pain, worry and stress, to find some light and laughter, is too often used by others as proof that we’re fine. That we’re faking it. That we’re not really in pain.
After all, if we smile, if we leave our house, we must be better, right? We must have been fixed. We certainly no longer need care. Or, even worse, our trying to have a life with this pain card we’ve been dealt is used as an indictment that our pain was made up or exaggerated to begin with.
That is soul crushing. It extinguishes any light we may have found amidst the darkness.”
1. Your pain is rooted in your biology and is always real, even if it can't be medically explained. You're not alone; you're believed and supported by this community.
2. People can't see our pain, so they often invalidate our experiences. People who may invalidate our pain include health care professionals, friends, family members, colleagues, employers, insurers. Remember that it is not you they are invalidating; they are invalidating pain that they don't understand.
3. Speak Up: If you feel comfortable doing so, express that you feel invalidated when someone doubts your pain. Remember, you don’t need anyone's validation to affirm that your experience is real, and you are worthy of care.
TrainPain is the Grand Prize winner in the 2023 innovation competition of the American Academy of Pain Medicine & MIT Hacking Medicine