“How do you deal with your illness?”
“What’s it like to go through this?”
And the questions go on and on and on. I had no idea how to explain it so for the most part I skirted around the subject and found a way to not answer. Really how can you explain it? Is it at all possible to truly make some one understand what it is like to be chronically ill? About a week ago I spent a night doing the insomniac peruse of the internet and came across a gem on the net. I was doing my weekly check on any updates on the Lupus website and found a new section. This section of the site focuses on other sites that are dedicated to spreading awareness of Lupus. This lead me to the LFA’s page on FaceBook which lead me to another website.
But You Don’t Look Sick? is a site dedicated to men and women around the world that are living with chronic illness and pain. The founder of the site, Christine Miserandino, has lupus and started the site to reach out to others like her in order to help them. I spent the majority of the night reading through articles about life, products, cooking, and humor and then I came across “The Spoon Theory”. As I read I couldn’t help but cry because for once I had a way to explain what I’m going through. For once maybe I could get more than pity from people, maybe I could get true empathy.
Since reading this, and sending it to friends and family to read, I have had an immense sense of relief. This was not the first time that I have seen things about myself and my life mirrored in another person’s words but it was the first time that others in my life could see it too. Am I saying that my case is the same as Christine’s? NO… Every cases is different and everyone handles it differently. But some things are the same, we, like so many others, are just trying to use our “spoons” wisely, we are wishing that we could once again live a life without having to think about our “spoons”, and we are hoping that those who are closest to us will try and understand so that we can live better lives.
So here I am, planning my day for tomorrow so that I can use my spoons wisely, and starting my own little crusade. This is me… spreading Lupus Awareness in my own way. And hopefully my efforts, however small they maybe, will make a difference.