Recently, I found myself around other advocates for an annual summit we do all together. When it came time to get ready for the event, I knew I had to start changing things up, because I had been “in hiding” for some time – not as active within the community, finding it hard to relate to others with certain subjects, and when it came down to it, I needed a break from “being sick.” Now, when I say “taking a break,” that doesn’t mean I went into remission or my symptoms finally went away because I told myself I needed to step away from a few things.
It means every so often, I hide in my shell, because I am in denial of things going on.
I’ve had this disease for 13 years now, and as much as I talk about acceptance, I know that I should talk about the subject that is taboo to us – denial.
Typically, I’m not as social as I used to be. Crohn’s has taken away many friendships over the years and as much as I’d like to blame everything on that, it’s just as much me distancing myself when I feel people don’t understand me – both those with and without IBD. But when you are in the public eye advocating for others and others turn to you for help nearly every day, there is a certain weight that we don’t talk about that can affect us.
I’ve had many sleepless nights in the past few years due to being woken up with someone dealing with an IBD crisis and if I’m unable to help to a certain extent, that weight does not lift quickly. Sometimes that weight, in addition to my own issues, becomes too much to bear and I acknowledge that I need to slip away for some time, to deal with my own self-care, to make sure my own mental health doesn’t suffer.
I want to take away everyone else’s pain and sometimes, that causes my own pain.
Sometimes, unannounced, I pull away from others in my own community, not to intentionally hurt them, but because I realize that my own coping mechanisms just aren’t enough to help others in ways they need it. I need to put myself first. That has been extremely hard for me to accept. I find myself being a hypocrite a lot; I advocate for everyone else to speak up for themselves, manage their self-care as best as possible and to seek help when needed. But issues arise when I don’t take that time to talk to my mental health provider, let friends I need a break from “this sick life” and just do my own thing for a while – a means of decompressing.
That is the downside to being a very active blogger and community member within our large chronic illness community. We need to realize that many of the people we go to for help, whether it’s every few months, once a year or quite often, are people first; they’re also patients dealing with a lot on their plates. Giving others that piece of understanding by telling them you just need some space for a while might be the best thing to do – whether it’s just your personal Facebook/social media site or maybe a group you regularly attend with friends outside of the illness community. Taking the first step to acknowledge you need a break for your own self-care is important and shows how hard managing illness can be.
See the entire article at: When I Distance Myself – CrohnsDisease.com