* Looking back on 5 years of ButYouDontLookSick.com
There’s a pain that can be worse than any physical disease.
It’s the loneliness you feel when you see your friends go out and do things without a second thought and how that is an impossible dream for you. How the simple act of attending class or going out to supper becomes a mountain you just cannot scale, because of the varying weights that disease dangles along with it. It is so difficult when you are all alone and those you love are where you want to be and they don’t even understand the magnitude of how much you would love to have that normalcy to be there. I would love to be able to not deal with a single consequence and only reap the rewards of fulfilling that task with them, but I can’t always do that.

It’s the pain of being different—and no one understanding the magnitude of that difference and how every aspect of your life is touched with the tentacles of your ailment. You can’t make a simple yes/no decision on the spot because you have to think about its impact on your body and your future and how that impacts those you love. Nothing is easy and everything becomes important.
It’s having to think through the response to the question, “How are you?” Who knew that was such a deep question, but to those of us with chronic illness, we all know the struggle involved to give a truthful, but upbeat answer. You crave for others to understand that you love and appreciate your life, but that does not make a single breath of it easy or mean that you’re “doing fine.”
It’s the guilt that can accompany it all. Am I holding my family back? Am I putting too much work on my husband? Will my children understand how much I love them even when I cannot run or jump, or even just walk with them? Can my parents truly know how grateful I am for their protective care during the years before, during, and post-diagnosis, each day waking up trying to learn to be the best person I could be with this illness (and not always succeeding)? Can my siblings forgive the extra allowances I was given in retrospect? Can I forgive myself for not being able to do it all?
Like many of you, I’ve lived a life like this. I’m 28 years old and have been chronically ill for two thirds of those years now. So it’s not like we don’t have coping mechanisms that help tackle these pains. I have a faith that has been blessed by the inward turmoil that goes along with the pain (physical and emotional) and I have an appreciation for the important things that come with being able to live the simple life. Yes, being able to, not being stuck with it. But that doesn’t mean that there aren’t those moments. Those moments that you just would like someone to understand.
And here enters “ButYouDon’tLookSick.com.” I’m an innately shy person. Having lived a life of near hermit-dom for many years along the way, I suppose a lot of introspective tendencies have come my way. But when I read the Spoon Theory, like you readers, I was touched in a way that you other spoonies can relate. Someone out there gets it. In fact, not only one person, there’s a community who does. And perhaps I’m more of a lurker than a talker, but even I can appreciate the blessing of seeing (through articles, discussion boards, etc) that we are not alone. And for those of us who need to feel some compassion and understanding every once in awhile to get us through those rough moments, I want to say thank you for this site and the community that cares, that has evolved within its walls. Together we can make it through each day, and make it better than we could have alone.
Written by Carrie Beth Burns © 2008 butyoudontlooksick.com