"Underlying Illness"

I've come so far since being diagnosed with (idiopathic) Subglottic Stenosis as a young twenty something new mom, at a time when my entire existence was in transition. I look back on that time and have so much compassion for my young self and I'm proud of her. She was given a life sentence with chronic illness and handled it with so much power and grace. Sometimes I think young me handled it better than current me because now I've had years of being worn down, years of repeated surgeries and years of realizing that this isn't just going to go away. No diet, no amount of lifestyle changes or alternative therapies are going to make my body "healthy". The roller coaster of living with chronic illness. 

I've found that one of the hardest parts to navigate is the lack of control. I am completely out of control of my own body yet I still feeling as though I am to blame for what I'm going through. It doesn't help that, although I've given up on trying to find an answer or a reason why, when I talk to about my illness it seems as though everyone else wants to find one which further solidifies the idea that maybe I'm doing something wrong. I know that it's all well intended but those deep seeded ideas and beliefs are hard to unlearn and every hint that maybe there's something I need to change brings them up again. 

These ideas come from an entire lifetime of being immersed in diet and wellness culture, which is why I so passionately reject it now. I am living proof that "lifestyle" doesn't equal wellness. Living proof that you can do everything "right", live in a small body and manage stress appropriately and still have an underlying condition that you have no control over. Humans are funny though, we don't like to think of situations like mine, the idea that maybe we don't have complete control of our health and maybe health is actually a huge unearned privilege. 

Which brings me to navigating chronic illness in 2020. During a global pandemic in which those living with underlying conditions have poorer outcomes than those with health privilege.

    "But they had underlying conditions"

A statement I've heard many times over the past ten months. This statement keeps coming up in conversation and even worse, used as a justification and to fuel the anti-mask/ant-vax movement(s). As the death count continues to rise and people continue to use this statement as though the death count is a set of numbers and not actual human lives I've started to think about how much this statement is proof of an absolute moral failure in our society. Every time I hear it now it's like a harder punch in the gut knowing how our society feels about people who don't have the privilege of living with a clean bill of health, how society views those living with underlying illness. I live with underlying illness, I am high risk. 

I am so much more than my illness though, I am a a human being with a beautiful life. I have two young children and a family, I am an advocate, I love deeply and feel even deeper, I care about issues that most others would prefer to sweep under the rug because it doesn't affect them. My life matters and I know that but the fact that I feel I need to justify why it matters is further indication of the moral failure of our society. My life matters, someone living with cancer, their life matters. Those living with heart disease, diabetes or any other comorbidities, their lives matter.

All I ask is to open your mind, to think before you speak about the impact of what you're about to say, how it will be received . Think about what you really mean when you justify a death due to underlying illness because to me and many others who are already trying to navigate living with chronic illness it's sending a very loud and careless message, that our lives are less valuable because of our illness.