I have spent the last decade, and a little more, dealing with being disabled and all the lovely things that come with it. I lost my job, most of my friends, and pretty much everything I did for fun and recreation went out the door. The long weekends of hiking, fishing and camping in the woods are gone. Road trips are a thing of the past, unless I have a break of a few hours. Life changed. For me this has been a long journey, and sometimes I forget that for those around me it hasn’t been, and that dealing with me, and my issues can sometimes be daunting. BUT, my questions time and time again is this, “Do you ever stop and think what this does to ME? How it feels to not be ME? How it feels to know I can’t go and do things like my partner and my family?” Unfortunately, people are too focused on themselves to see how their words make the person with a disability feel MORE worthless, MORE disabled, MORE incapable.
For the ones saying these things and wondering when life is going to change or get better, my answer is….NEVER so make the most of what you have! My pain is constant, and I have learned to LIVE in the ways I can. It is a simple life with very little true adventure, but an adventure is in the eyes of the beholder. A drive to a new place where you can get out and walk around a little bit is WORTH it. Watching the sunset from somewhere new with your partner, is WORTH it. Wandering down roads you have never traveled and getting a little lost, is WORTH it! Any little adventure, no matter how far, means the world to those who don’t get to experience the world in the ways they once did. And for those waiting around for their loved ones to do things again, as time goes by, let’s be honest, autoimmune conditions, and a lot of disabilities, don’t get better with age, they get worse, so it’s important to make the most of what you have NOW, not argue about what you aren’t doing. I feel like so much energy is wasted on this, instead of just accepting that life has changed and finding ways to make the most of it. I think that is easier for people with disabilities, because we HAD to adjust, while those around us, don’t really have to, unless they want to be with us.
A diagnosis that brings about life changes often determines where life goes. I don’t mean that a disability defines a person, I mean that changes happen and sometimes they are very unexpected. It can take months and sometimes years for people to come to terms with their illness, let alone how it is going to change their lives, and having people around you who support you and understand that this isn’t as hard on anyone as it is on the person going through it. But we are human beings, with emotions and we have a tendency to see the world through a filter of “how does this affect me”, instead of “how does this affect them?”
Instead of asking, “when are you going to be able to do _____ again?”, how about you come up with a new suggestion? Instead of telling someone all the things you don’t do anymore together, come up with something new! Create new memories and be willing to change as much as the person coming to terms with often changing symptoms and degrees of illness. Life doesn’t have to stop, it just has to change in often subtle ways, and if you take it in stride, those changes will have very little impact on your life as a whole.
Have a wonderfully wickedly elevated rest of your weekend! ~Nicole~