I’ve been living with chronic pain for more than twenty years. Over the years, the pain has expanded to different areas of my body and increased in intensity.
During this time, I’ve sought out others who experience similar things and found that many people live with chronic pain and many of those people have experienced ridicule and a lack of understanding from friends, relatives and even strangers.
Recently, a friend and fellow sufferer and I were talking about how pain has changed our lives, how our family and friends don’t always understand and sometimes make us feel guilty about experiencing pain.
They don’t understand that pain is a thief.
Pain robs us of so many of life’s joys. Pain can keep us from participating in family activities, from socializing with peers, from playing with our children, from holding down a job, from taking care of our homes, from living life to the fullest.
I’ve had to disappoint family members who wanted us all to go shopping together, to go to amusement parks together, who hosted family picnics or parties, etc. I’ve had to stay home rather than going grocery shopping, to stay in bed rather than eating dinner with family. I’m constantly having to remind my husband that going out to eat, to the movies, etc. is terribly difficult for me because of the pain.
I wasn’t able to play with my son outside, in the yard, like I would have liked. I haven’t been able to walk my dog without the use of a power chair for years now, which means I can’t be outside in the snow or rain, can’t venture off a level surface, have to be aware of how far away from home we go.
Living with chronic pain is about much more than just the physical pain. Trying to function while in pain takes a lot of energy. It’s physically exhausting. You feel tired all the time and the least little bit of exertion devastates you. After a day of forcing yourself to be active it can take days to regain your strength.
It’s emotionally exhausting. Trying to keep up a front, to hide the level of pain we are experiencing, to not be a burden to loved ones, trying to prevent depression from overtaking us and suffering in silence is draining. Depression often accompanies chronic pain.
You are reminded on a daily basis of all the things you can no longer do, places you can no longer go, things you can no longer enjoy.
You find yourself resigned to spending time in bed when your family is enjoying time together. You spend a lot of time watching life on the other side of your window. You lose track of what day it is, what time it is, as your day is measured in moments and degrees of pain.
People think they can motivate you by telling you to “suck it up”, “stop thinking negatively”, “if you’d just not think about the pain it wouldn’t be so bad”, etc. None of this kind of talk is motivating, but it is demoralizing, diminishing and abusive.
People criticize you for taking medication, suggesting you’re addicted to it, using it as a crutch, accuse you of claiming you have pain just to get medications. They accuse you of seeking attention.
Living with chronic pain robs you of so many things, apparently it also robs the people around you of empathy.