This is an exercise I like to do when I’m trying to figure out what something means to me or how it affects me. I just write down as many words or phrases or sentences that I can think of that relate to the word/concept I’m trying to describe. Chronic pain is so different for everyone, and I needed to understand the role it plays in my life. It’s not a “feel good” exercise, but it helps me identify where some of my not-so-positive feelings are coming from.
To give you some background, I live with a significant amount of pain. Not as much as a lot of people, but it’s enough to alter the way I experience the world. I have been diagnosed with degenerative disc disease, arthritis in my back, herniated discs, a torn disc, and facet joint disease. Basically, my lumbar spine is a mess, and it hurts. It hurts all day every day. Some days, the pain is barely present. Other days, it dominates my entire conscious mind. Pain is so subjective. I often wonder if someone else had this pain, would they experience it as I do? Would it be just a minor inconvenience, or would it take over their life? I don’t know, but this is what my pain means to me:
Chronic Pain is…
- Not knowing what to expect day to day. I never know how badly I will hurt. It is hard to make plans.
- The first thing I greet in the morning, and the last thing I think about before going to bed.
- The tight-lipped smile I give people when they say, “I know how you feel.”
- Unanswered texts and missed phone calls.
- Cancelled plans and worrying about appearing “disinterested” or “flaky.”
- Never really knowing how fast I can run or how much weight I can lift or how far I can bike. I feel I will never know my full potential.
- Carefully considering the best way to wash my face in the morning so I don’t have to bend over the sink too far.
- The humiliation of needing help using the restroom, walking, or even rolling over in bed. That’s on the worst days.
- ER staff that don’t take my pain seriously.
- The sickening realization that pain isn’t just something I experience, it has also become a part of my identity.
- Lonely, isolating, and feeling misunderstood.
- Lost friendships.
- Saying “I’m good” when I’m really not.
- The anxiety I feel when booking a vacation months, weeks, or even days in advance because I never know how I will feel.
- Dreading long car rides and plane flights.
- Avoiding the movie theater because I can’t sit that long.
- Ignoring other serious medical issues because they all take a backseat to the pain.
- Unexpected and uncontrollable tears in inconvenient situations.
- Not knowing when to accept help from others. “Am I in too much pain, or should I try this myself?”
- Being extremely in-tune with my body, yet feeling as though it is not my own.
- Restless nights and poor sleep quality.
- Struggling to hold a conversation because sitting or standing here talking to you hurts like hell.
- Feeling like a burden.
- Invisible. Sometimes, when people aren’t able to see my pain, I feel invisible, too.
- Anger taken out on the ones I love most.
- Always having an exit plan at parties.
- Finding an empty room in a full house to cry. Or breathe. Or lay down.
- Pretending “It’s not that bad” or “I’m getting better” to make everyone else more comfortable.
- Perfectionistic tendencies and a need to control everything, because I’m not even in control of my own body.
- Missing out on things I’m really excited about.
- The epicenter of my anxiety and depression.
- Eating Advil like it is its own food group.
- The guilt I feel for complaining when I know there are so many people that have it much worse than I.
- A monster that is always hanging out with me uninvited.
I look at this and see just how significantly my back pain impacts my life. When something is invisible, it is hard to name it and describe it. I find that once I do this, I am able to breathe and move on. I add to this list occasionally as I become more familiar with this part of me. Each time I write something down, I try to imagine letting the words go. My pain does not own me. It is a part of my life, yes, but it does not define who I am.