When People Who Know I Have Chronic Pain Ask, 'How Do You Do It?'

“I don’t know how you stand it.”

I hear this from a dear friend who is experiencing pain in the leg, shoulder or other source of injury.

“I can’t concentrate on anything. I can’t do anything!” my friend says. She, like me, is doing plenty of doing — working, caring for families and pets, living as best she can. She just can’t see it because of the pain. Her pain is front and center in her mind, and shouts when she moves the offended limb.

“I seriously cannot imagine having the pain you have all over, every day,” she continues. “How do you do it?”

This conversation makes me feel awkward because it paints me as some superhuman with the ability to withstand pain that knows no limits. I most definitely am not. I feel exceedingly grateful that my good friend understands what I am going through, and isn’t minimizing it or ignoring it. But I also feel sad, like I am trapped on a train and can only look through the window while my friends can hop off later and enjoy the landscape. And I will live on this train. I have no choice.

Fast forward a couple weeks and my friend’s pain has become a distant memory, and her life is again more balanced and less troubled. Mine is not, and most likely never will be. How do I stand it? Honestly, I don’t know. I am as strong as I can be, but wish I was stronger to combat the constant pain and fatigue I experience. I am afraid to stop and think about how I “do it,” because if I do, I might fall apart and the pieces might not go back together the same way again.

I feel like all my painful parts are taped together inside with cellophane tape, and when it peels and snaps I just quickly apply another piece to hold my body and life together. From the outside I am now a tall, middle-aged, heavyset plain woman. I can “pass” as relatively normal. My deformed feet can be hidden in shoes, my weird knees can hide under pants, and thankfully my irritated sciatic nerves do not glow in the dark. I might look strong, but all it takes is a sharp cut of pain to ruin the facade.

Today I dropped a can of cat food on the floor and when I bent to pick it up, I was rewarded with such a shocking level of pain I cried. Actual tears. It doesn’t happen often, but when it does it scares me. My poor cats fled the scene, and I left the can on the floor until my medication kicked in and I could get at it more easily. Play this scenario out and you can understand my unruly domestic issues. I’ve learned to let things go to a level that “normal people” would not be able to stand. I live in a messy, chaotic environment in which tasks are prioritized and few get completed. That is how “I do it.”

I grit my teeth throughout the day, enjoying my job to the fullest because I truly love it. I know there are times when I look like I am angry or upset, but I am not. It is just my face unable to hide the stabbing pain. Some colleagues at work understand, and some make light of it and tell me about their own pains and how they deal with it. Some even treat me like I am a hypochondriac. I’ve learned to be very careful who I talk to about my real troubles. There are times I want to just sit down and cry because of the pain, but then I look around me and realize the gift of my job makes me strong. I take a big breath and keep going. That is how “I do it.”

I focus on my family of dogs, cats and parrots, who unfortunately have to live with my waxing and waning pain levels. Thankfully, they are very accommodating. The dogs and cats love the extra naps I have to take, and the birds are very patient when breakfast time is late due to a rough morning. Despite how I feel, they need food, exercise, love and clean bedding, and this cannot be ignored. Delayed a bit, maybe. But not forgotten. That is how “I do it.”

I live alone. Very alone. I have many dear friends and family who make life worth living, but basically I am an island and this journey of ill health is all my own. I’ve lost several important relationships over not being physically well, including an ex-husband who would not believe the disease was real when I was first diagnosed. Every day the responsibilities of living are completely my own.

In bed comfortably and need to get meds that are downstairs? Need laundry done? Have no food and need to go to the store? Balance the precarious finances of living? No help available. It gets exhausting and hard. But somehow life goes on, and I get things done by putting one foot in front of another and plodding painfully through each day. That is how “I do it.”

I am worried about the day when I cannot just “do it” anymore. When my world falls apart and I can’t bend to pick up the pieces. When the tape stops sticking. That worry is almost as difficult to manage as the physical symptoms I experience. I push the thoughts back into the Room of Denial and force the door shut. I stop thinking about what I can’t change, my pain, and hope the lock holds. That is how “I do it.”

Good luck fellow pain travelers, and may you get to hop off the train, at least for a little while. Keep doing it.