While my disease journey is ridiculously glitterful and filled with blessings, love and light, there are dark, gloomy and cloudy parts that I struggle with. These consist of feelings of shame, guilt, and even embarrassment. I dream of being able to come back from an appointment with my specialist and let everyone know that things are improving and from a health standpoint I’m doing great, honestly I’d settle for a no changes, everything is status quo report, and I’m sure my friends, family and medical team would too.
What hurts the most is not sitting in a Dr.’s office getting the results or bad news, it’s what follows. It’s having to call my mother and tell her the MRI showed progression, it’s knowing she’s going to ask what we do now and knowing I’m going to have to tell her that there is nothing else to even try at this point. It’s the looks people give you when you return to work and they ask how your appointment went. Generic answers like “fine” and “okay” aren’t well received, especially by people who care about you, and can see straight through that fake smile and can hear the sad undertone even through the over the top cheeriness that my own voice struggles to expel. It’s the hurt in their eyes that matches mine, it’s hearing them apologize that this is my life, and wishing they could do something to fix it, it’s knowing that they truly mean it. The reality is, I wish they could too.
I struggle with feeling like a constant Debbie downer, a constant drama queen, I find myself wanting to yell at my own reflection “just get it together already, enough of the same old song and dance.” I worry that others feel the same.
The medical side of me, wants to yell at my own reflection even more; “why can’t you just get better already, look at all the resources that have been thrown your way, the countless hours multiple physicians have spent on you and your case, to get you to specialists, to get you top of the line medications, all for you to continue to have disease activity, all for you to have the rarest possible side effects leading to termination of the medication. Can’t you see how much time and energy, not to mention money that’s been wasted on you?” I feel guilty and ashamed; I worry that I’m a burden for my physicians.
To the amazing group of family, friends, coworkers, nurses and physicians I have beside me, behind me, constantly loving me, supporting me, cheering me on, and holding me when it all comes crashing down around me; I’m sorry. I’m sorry for not getting better, I’m sorry loving me isn’t all glitter and sparkles. I’m sorry loving me hurts sometimes. Please know, that if I could wiggle my nose, snap my fingers, or dance around my yard in a circle chanting some nonsense to fix all of this , I’d do it in a heartbeat, not for me, but for you.
Thank you for loving me, when it isn’t glitterful.