Quite honestly, I long for the days when people saw me and didn’t think of the girl who got sick. Back then conversations didn’t include my health but the many other things I pursued and continue to work towards outside of trying to battle this illness. I wonder, when did people stop seeing me and only the illness?
I really notice these conversations when I am with family and friends with my sister. She is following her career dreams and people always ask how it is going for her. But no one thinks to ask about my passions or goals, it always revolves around my health struggles.
One of the most difficult questions I still feel it is a challenge to overcome is the whole, “but you don’t look sick”. This sentence usually follows statements such as: “it can’t be that bad”, “you must be getting back to normal”, and “you are getting better”. Don’t get me wrong, I am so grateful for my port-a-cath, Hope and stoma, Oscar but those statements can truly be hard to answer. My approach is always yes and I immediately want to change the subject or stop that conversation altogether. I know that many times these statements come from people not knowing what live is like with a chronic illness, but none the less, a difficult conversation to have.
“You don’t look sick”
I always find this one a real challenge. I have always been one who has prided myself on trying not to look like a patient who has chronic illness. Doing my hair, wearing make-up and how I dress does not change the illness that runs through me. I don’t want to look like a sick person. I want to look like me. And trust me underneath it all, I have all of the scars and appliances that are daily reminders that my body is on a different path. Quite frankly I want to ask, what does sick look like? I think I just might do that.
“It can’t be that bad”
I learned a long time ago that we cannot understand the experiences and emotions of others, and not to make comments about how one is adjusting. I am not sure if this is a way for people to feel they are putting our experiences into perspective like the whole “someone always has it worse than you”. But let’s face it, no one want to hear that when they are trying to overcome an obstacle.
“You must be getting back to normal”
I have a crazy, uncontrollable ostomy with many other severe symptoms from the illness, and a port-a-cath I use daily. Will someone please remind me what normal is?
“You are getting better”
One thing I always hope for is a cure to this horrible illness and to be able to truthfully say, “yes, I am getting better”. Right now I quietly say, "trying too". No one wants to hear “No, I am not getting better. This illness has no cure at the moment”. To be honest, I don’t want to remind myself of that either.
I know in my heart, these statements are not intended to hurt and are ways of showing concern, but nonetheless, it can still be a challenge to respond to. For this Thanksgiving I am trying something new, gratitude for Oscar and Hope. Both have made my life so much better. With regards to friends and family who don’t quite understand, sometimes life isn’t about what we say or don’t say but just the comfort and love of those who surround us. That is who I will be sharing my Thanksgiving with and I truly wish you all the same festive holiday.