I just decided to leave yet another “support” group for chronic pain… because all too often there is a subtle, and sometimes not so subtle- tendency to try to one-up another in terms of pain. “Oh I have EDS- you don’t know pain until you know EDS pain” “Well, I have CRPS, you don’t know pain until you know CRPS pain” “I have Fibro- and that trumps EDS and CRPS- I’m in pain 24/7” “Well I’m in pain 25/8- beat that” and on and on. Gawrsh it’s so tiring and annoying!
Pain is pain. All of us with CP conditions know pain. We know it intimately. We experience pain levels that would have “normal” people dropping to the ground in agony. And does that make us better than anyone else? Uh no- it doesn’t! I’m so tired of the constant battle to compare and be the #1 Pain Warrior. Just battling the pain alone makes me exhausted. Why should I have to “prove” my pain is “more” than anyone else’s? Frankly- I hate that ANYONE suffers from chronic pain, at any level.
I hurt. I hurt a lot. All the time. In fact, after being awake for more than 72 hours dealing with a flare, I crashed yesterday and slept 17 hours. And I’m awake now- still feeling tired. Still hurting. And that doesn’t make me better than anyone else. It’s just my reality. And I am positive that other CP sufferer’s realities are just as painful, just as tiring, just as depressing. I pray for all who hurt. And I pray that we can be more aware of one another’s battles, and just wish each other comfort. Recognize, validate, support. There’s no possible need to be “the best” at it.
Pain is Life-Changing
I’m sad that it seems that one of the constants of dealing with CP is negativity and competition. I really hope to change the stigma that is attached to CP through my writing- maybe I can’t change the worldview, but if just one person says, “Wow, I never knew pain could be so life-changing” then I have done my job.
Yes, pain IS life changing. And a good amount of that change is scary, and dark, and horrible, and maddening and lonesome. But some of that change- some of it is good. And precious. And miraculous. And life affirming. And when you think of it in those terms, it doesn’t seem quite so competitive, does it? Instead, it becomes a very personal and meaningful way to own your pain and apply what you have learned about it to other areas of your life.
How I Cope
I journal daily- sometimes poetry, but it’s mainly free-form journaling- just whatever comes to mind and let it all out; and lately I’ve been journaling ALOT about this Chronic Pain journey I have found myself on. Just the other day I leafed back to the beginning of one of my journals and I read something kind of similar to today’s frustration. That journal was 6 years old.
I have taken a huge leap of faith and begun my own blog, “Blessed- My Chronic Pain Journey” on Facebook, inspired by the Spoonies For Life Support Group that I am a part of. I’ve been writing forever, but I always poo-pooed the idea that it was ever “good enough” to publish. I posted in the Spoonies support group a shorter version of what you are reading now, about my decision to leave another Facebook support group due to the sense of one-uppery (is that even a word lol? :-p ) and competition among its members.
A fellow CP Warrior and writer, Tina Barzano, encouraged me to write an article for the SFL website… and then it was like a cosmic explosion happened and I realized that I could use all this life-changing pain for the greater good. I hope that this article and my blog inspires others as wonderfully as Spoonies For Life has inspired me. I find it amazing that at age 43 and at the most challenging time of my life, I am experiencing the joy of rebirth.
I firmly believe this all happened for a reason- my post, all the wonderful supportive comments, Tina’s gentle persuasion; I’ve been searching for some meaning to my CP journey, a reason as to why I’ve been cursed with such a life. After this experience, and the wonderful responses I received, not only do I think I found that reason- but I’ve also changed the word cursed… into blessed.
Namaste, dear ones. Thank you for inspiring my daily and hourly- and I wish you all pleasant days and peaceful nights.
Kathy Marie is a happily married 43 yr. old mom of 4- 3 girls and a boy- ages 16 to 26. Her hobbies include writing, reading, adult coloring pages, cooking and when health permits, hiking.
Kathy has been diagnosed with Fibro, RA, Hypothyroidism, Endometriosis, GPD (generalized panic disorder) Chronic Fatigue Syndrome and Depression.
On a typical pain day, you can find KM doin’ the housewife thing and taking frequent breaks to madly type down the thoughts that fly around her head regardless if they make sense or not. And often, they don’t. On a typical flare day, you can find KM curled in a miserable ball and repeating the phrase “This too shall pass” while she battles the twin demons of pain and panic.
All of what she deals with and experiences on those typical days becomes fodder for her blog “Blessed- My Chronic Pain Journey.”