How do you explain the concept of chronic pain without sounding like a crazed individual?
You don’t. You will sound crazy no matter how hard you try, so stop trying.
Those with chronic pain and fatigue will wake up every morning feeling like you do on the worst day of the worst case of the flu you have ever had. That’s on a good day. And no we have no idea why or how to make it stop.
Isn’t that the craziest question you’ve ever heard? How do you make it go away? Um…If I could make it go away believe me — I WOULD!
When you pass me in the grocery store you see a healthy, slightly overweight 30 something with two kids. I look happy, I have a smile on my face and a cart full of groceries. You continue on your way without a second glance. If you could see me the way I feel, you would see someone completely different.
You would see a 80 something lady, stooped over her cart, eyes watery with tears of pain, shuffling her feet at a limping crawl.
If was smart that day, I would have been in an electric cart and be damned the stares and rude comments from those who dare judge me.
Yes, I am sure you’ve already told me three times about the ladies night in two weeks, but with the pain and the fatigue and the brain fog, I am lucky if I remember where my own feet are. So cut a girl some slack and don’t say: “Don’t you remember?” If I remembered, would I be asking about it?
And don’t think we don’t see the eye roll and head shake as you walk away in disgust thinking we are complete scatter-brains. We see it, and it hurts. Chronic pain suffers want to be normal, there was a time when we could recount entire conversations for you — from two years ago. Yes I have tried making a list. Guess what? I don’t remember where I put it! I have five daily alarms set on my phone for something as simple as taking medication. If my children were enrolled in school, I would have to have an alarm set to remind me to pick them up from school. Does this mean I do not love my children? NO! It means there are quite a few days where the only thing I can think of is a bed and a heating pad, much less plan 4 hours ahead to picking up kids from school and wrestling them through 2 hours of homework.
I am not saying that Chronic Pain sufferers need pity. I am not saying we are excused from behavioral norms. I am not saying that we need special treatment or allowances for inappropriate behavior. Life must still go on, and things must still be taken care of whether we like it or not.
What I am saying is this: step outside your bubble for 5 minutes the next time you see someone NOT putting their buggie in the shopping cart corral in the parking lot. Even I am guilty of this one. I see someone not putting it back and I immediately think, “lazy”. Which is SO unfair, because I know there are SO many times I do not have it in me to walk those 30 steps to the corral and back to the car, I feel as though I am going to collapse in a puddle of tears if I take just one more step.
I still remember the one time a gentleman made my day in the parking lot. I was standing at the back of the van, I had just shut the lid and was looking at the corral across the way. I was practically laying on the cart to keep from falling down. He walked by me, looked at me, came back to me and said, “I’ll take that for you miss.” I don’t know why he did, but I was insanely grateful to him for it. I cried as soon as I got into the vehicle, it was a huge burden off of my shoulders, and it was such a simple thing.
Next time you go somewhere, don’t hunt for the closest spot you can find in the parking lot, park a little further away if you are capable of walking the distance. You will probably never ever meet a person who benefited from that closer spot being open, but that isn’t the point. I may not qualify for a handicapped placard, but that one spot closer to the door would have been very helpful to me, or the 7 month pregnant mom, or the new mom with the 6 month old, or the other mom with 3 small children. Or the other Chronic Pain sufferer who had no choice but to go to the store today because they had already put it off for a week and there wasn’t any food left in the house for her family.
Don’t use the handicapped stall in the bathroom. Yes, I know it is big and comfy and oh so nice to not have to straddle the toilet to shut the door. But it is not designed for able-bodied individuals. It is meant for those in wheelchairs, walkers or others that need assistance when using the facilities. Some days, I absolutely must have that bar next to the toilet to get my knees up under me. And for the love of Pete do NOT people the stink eye when they come out of that stall and they do not APPEAR to you to be disabled. Remember….step outside the bubble.
It is time to raise the awareness level of the clueless around us. Those that suffer from Chronic Pain need to stop being silent. Do not be ashamed! Speak out, speak up and be heard!