As you may have read, my life has changed drastically recently. I went from being extremely active and hard working to being relatively immobile in a very short period of time. I still haven’t accepted that this is my permanent state of being–I just don’t know yet. There are still more stones to overturn, and I have hope for a complete recovery.
With all of that said, I have found it to be very helpful and important to seek out others who have been (or are currently) in the situation I’m in now. I’ve found nothing but HUGE communities of support on the topic of being debilitated by a mystery. It seems like many eventually find a diagnosis or at least a reason for the debilitation, so I believe I will eventually, too. The waiting game is so scary, though.
I stumbled across this website and realized rather quickly that I was among friends. One of the hardest things about being “normal” one day and then disabled the next is that there are hosts of people who don’t believe you. Friends, doctors, and even strangers look at me like I’m too young to be disabled. Maybe I smile too much (so that I can maintain some semblance of normalcy for myself). Maybe I try too hard to appear to be my usual self so that no one freaks out. I’m not really sure, and “you don’t look sick” is certainly a compliment; however, I feel like there is a whole universe of people out there who think I am making this whole thing up.
Christine Miserandino is a woman who has been diagnosed with Lupus and who speaks and writes about her experiences with the illness. It’s fantastic to have someone out there with such a strong and clear voice who can verbalize what it’s like to have an invisible disability. She unapologetically tells the world “hey, we may look normal, but our suffering is real. We need support.” She is transparent about her feelings and is so relatable. It can’t be easy to put yourself out there like that, but I am testimony that her thoughts have helped many in similar situations.
My favorite piece on the website is The Spoon Theory, which Christine wrote. I’ve never heard a more concise and tangible method of explaining what it’s like to trudge through an illness day in and day out. I believe I will take a cue from Christine and use spoons to describe my situation in the future, should anyone ask.
I think each one of us has something to offer everyone else, yet we don’t always have the courage or confidence to do it. It’s so fantastic to see someone out there simply offering her experience and undoubtedly saving hundreds from stress and insanity.
Thank you, Christine. Keep it up.