So ive been taken out for the count by Crohns for 6 full months now...the issues that are arising are difficult for my friends my age to understand, and even friends and family older as well. im off all meds but still experiencing fatigue and withdrawls. My issue is, how do i tell those who ask and care that i honestly wake up every day in huge amounts of pain? That my skin hurts all over from the withdrawls, that im mentally here but also not...this is getting old, though i know im on the home stretch of this first remission attempt.
I stopped feel quiet so pressured to answer others in detail after coming to a realization that wanting or feeling a need for others to understand the situation is completely unnecessary for them to remain involved in my life. They do not need to share my pain to recognize my pain. They do not need to know the agony - mental or physical - to recognize that the struggle of this disease is downright horrific at times.
When other's ask and I struggle with their response or lack of response after attempting to communicate what I feel; I find it's more about trying to find some validation for a life of pain and discomfort and unusual daily circumstances... if that makes sense?
As humans, I think we ask questions to try to connect and feel involved, not always to understand. Friends and family may be trying to simply recognize what you are experiencing, not necessarily understand it with all its complexity. I've found that the best way to answer them is by continuing to share and remain open - and allowing them to share their life's successes and struggles in return because there's no real end to it. It's not like we can reach a cured endpoint - and even in remission there are still going to be shit days. Even healthy people still experience pain, still experience sickness at times, still experience miserable wretched disappointments throughout life that have to be dealt with. The chronic nature of trying to share and communicate about crohn's gets exhausting at times, I often try to compare it to other more normalized life events or struggles - but things like pain, discomfort, etc. are simply not communicated well. They are universal as an experience - much like love, joy or happiness - but how it is experienced as a verb or how it influences an individual cannot be compared. Experience is unique in that aspect and makes it downright impossible to convey in a manner that received completly undisputed understanding.
In the general scheme of things, other's most simply can't understand. Even within the IBD community, our experiences and the way in which we experience them are vastly different and highly dependent upon so many other factors. With that realization, for example, I stopped comparing myself to my 55 y.o. arthritic mother who can still out-exercise me, when she would ask how I am feeling. She knows pain itself is real - but she can not technically understand or know my pain despite experiencing her own level of daily pain and discomforts. And I can not know or understand her pain or what it is like to be 55 because I'm not there. Some days it's hard to admit that I'm not an 80 y.o. Because it's easier to think I could be 80 and there's and end to it or it's normal with how my joints feel, or the limitations I've experienced or worked through/ with up to this point.
I'm 24 with Crohn's, and I feel like 24 with Crohn's. Someday I hope to be 80 and when that day come's i'll have earned the right to say I feel 80, whatever that entails or means. Empathy is not necessarily understanding, but validation of another's experiences good or bad, whatever they may be. When other's ask, they are probably seeking to empathize above all else.
when others feel a need to ask and express curiosity or concern - I find it's most effective to be honest and just keep the conversation moving along by asking about their life or moving beyond my disease and its symptoms, because we are so much more then the pain, medications, and fight - even if that is the first thing we may think of waking up and the last thing we may think about going to sleep. They don't need a black and white road map to understanding/ knowing your pain when it just needs to be recognized or validated. That will make it as real for them as it is for you, and in my experience that alone is more then enough to feel a sense of unity and move beyond the isolation that can often set in on both sides.
I swear one of these days i'm going to find a way to communicate things without so many words or seeming to talk in circles. But it looks like that day is not today, and I happen to enjoy circles :dance:
Might be kinda confusing since nothing on here really connects to any other online presence other then the blog link in my signature >.< But there ya have it. If anyone else wants to add me name is Kyra Gee, same location info as listed here.
