Chronic Pain is…

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.

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Welcome to My Mind

“Why don’t you just journal?”–a question I ask myself frequently, because I do, occasionally, journal. It feels good to get the mess inside my head on paper, to organize it and analyze it, to call out my feelings for what they are. But then that’s it. I just feel there can be so much more. I long to connect with someone, to have someone say, “I hear you. I may not understand what you’re going through, but I have felt these feelings too.” I want someone to connect with me, to say, “Yes, what a relief it is to know someone else is experiencing these things too.”  We find healing in our vulnerability with each other, when the wounds are raw and bleeding, and we take off the bandage. Something beautiful happens when we connect through our most painful and real moments and say, “Me, too.” Because chronic pain and mental illness can feel very lonely.

This also means that this is all about me. For once, I’m not going to censor myself for your comfort. I’m going to say things that may be offensive. The purpose of my writing isn’t to make you feel good, and you can stop reading at anytime. I’m going to complain. I’m going to feel sorry for myself. I’m going to sound hopeless sometimes. I struggle to talk about these things because I often believe my thoughts are far too lengthy and complex to be of interest to anyone. But for this, I’m going to try really hard to not care about what you think. Welcome to my mind, friends. Here we go…