I wasn’t going to write this post until I had a diagnosis. I was so tired of explaining, recapping, whining, and I was sure that everyone else was as well. “Dear world, I have X. Read about it here.” is how the post would read. And that would be that. Everyone would understand and be considerate and we would all move on.
Ha! I love my fantasy world.
But last week, it hit me. I wasn’t coughing. No limbs were missing. No rash scarred my face. Many people in my life still didn’t understand just how much my life has changed and probably wouldn’t even if I did have a diagnosis because I don’t look sick. But I am. And, like it or not, my life is different now because of it. I am not living the life I was living 7 months ago and I may never live that life again. I need to accept that and I need those who love me to accept that as well. This is my reality. And that’s what this blog is about, right?
I’ll admit, it didn’t just hit me last week. It punched me in the gut. What was there to not understand or accept? I said I hurt. I said I was nauseated. I said I could barely move.
But I don’t look sick.
We are, after all, a society that demands proof. In a world of bullshit and lies, where so many of us are pulling our weight and then some, asking for a break isn’t taken lightly. We’re all working moms, 2 job dads, somehow stealing hours from already packed days for moments with those who mean the most to us. Doing the most is something that I was proud to say I did regularly and I surrounded myself with people who did the same. Why would I slow down now? And if I was going to cry uncle at life, why didn’t my uncle have a name? Cancer. Diabetes. MS.
I have nothing. And I don’t look sick.
(If you love someone who is living with a chronic illness, please click that link. The work is copyrighted so I cannot post it here.)
I have no idea how she did it, but Christine Miserandino hit the nail on the head. She’s been dealing with her illness much longer than I and her symptoms sound like they’re more severe. But that. is. my. life. And she explains it in a way that I never could. I know this because I explained the “spoon theory” to my wife just an hour ago and I could hear the change in her voice. She’s lived with this just as long as I have and even she didn’t quite get it until now.
I’m still waiting for a diagnosis. I suspect lupus, but I’m missing those “AHA!” symptoms that would make it easy for the docs to diagnosis. I’ll be honest: the waiting is hell. Fighting an unnamed illness leaves you without the right medications and therapies that could prevent bad days or at least make them more bearable. I’ll also admit that I’ve felt like a crazy woman more than once, convinced that it’s all in my head. And whatever it is is complicated by my existing depression and anxiety. I was a woman who bounded with energy and wanted nothing more than to fill each and every day to the brim. Now, I can only get through about 50% of my normal activities and feel overwhelming guilt about the inevitable people and things that are left out.
Does it suck? Of course. Doubly so when I mentally abuse myself for a physical ailment I can’t control.
But let me be very clear. I don’t want your pity. I am one of the most blessed people you will ever meet. I have a wife and son who are my moon and stars. I have an amazing family who have accepted me and the life I’ve made for myself. I have incredible friends who make me smile and keep me accountable. My life is amazing because the people in it buoy me. But it is also different than it was 7 months ago and always will be. All I ask is that you respect this new life and my efforts to live it the best I can.
My diagnosis is a mystery. A no-name son of a bitch that steals from me daily. But I’m a fighter. And no mystery goes unsolved for long.