Living with Chronic Illness

BY : ANNA BOOTH

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“But you don’t LOOK sick.”

This phrase still rings in my ears almost 20 years later. That doctor invalidated all of the pain I was in with those five words. I doubt he has ever thought about our interaction again. I still think about it two decades later and have been trying to unhear it ever since.

When I was nine, I got sick with mononucleosis, and I just didn’t get better. For weeks, months, and years the fatigue dragged on. The headaches, the nausea, the achiness…it was all so intense that I could barely get out of bed. I was mostly bed ridden for the next few years. Desperate for answers, my mom drove me to doctor after doctor, all of whom kept labeling it “chronic fatigue syndrome”. My parents, trusting their gut, knew it was more. 

One of these doctors was the one who, with 5 simple words, fed into the lie that my young mind was beginning to believe that maybe I was making it all up. No one seemed to be able to figure out what was wrong and he was right…I didn’t LOOK sick…so was I? 

Three and a half years later, after spending a week at Mayo Clinic undergoing testing, I was diagnosed with Postural Orthostatic Tachycardic Syndrome. I was finally given words for what I had been feeling for the majority of my later childhood. Words for all the missed days of school, skipped sleepovers, and lost friends. Words for the pain that no one could see, but I could feel. 

A diagnosis didn’t solve anything, and my health journey has been a long one, but feeling validated was its own kind of healing. 

It wasn’t until later in my adult life, while processing through years of chronic pain with my counselor, I realized how deeply affected I was by that doctor’s words. Not just those words, but by the lie it perpetuated that if others couldn’t see my pain then maybe it wasn’t worth their time. Maybe I wasn’t worth their time. I have spent a large part of my life trying to prove that I am. Being a helper by nature, I subconsciously began to believe that I had to make up for the things I missed because of illness. My brain convinced me that I needed to work overtime to help, to please, to care for…because maybe then I would be worth people’s time. 

As a sophomore in college, I lived in an apartment with three roommates and had a friend that felt like our fourth. One evening everyone decided to go out to dinner, but I decided my body needed to stay home. Without missing a beat, Katie said she’d stay back with me so I wouldn’t be alone. She made tea, sat in my bed with me and helped me create a tumblr account (any other tumblr lovers out there?). We spent the next several hours scrolling through beautiful photos of faraway places and honest words that made me ache (the good kind), and I’m not sure she even knew what it did for my heart. She met me where I was. She said, with no words at all, “I can’t see your pain, but I believe you. You are worth my time.” And over the next decade, through many more people like Katie, my heart began to believe that maybe that was true. 

You see, chronic illness is lonely. Sometimes excruciatingly so. Not just because the pain is usually invisible, but also because it is a long road often with very few answers. And when the answers do come, they are complicated and uncertain, time consuming and riddled with sacrifice.

Our culture is not very good at this. Actually, we’re terrible at it. We like quick fixes and straightforward answers. We move on from one headline to the next, forgetting to allow ourselves the time to actually grieve. We send flowers when someone dies and then never check back in. We expect women to get back to work after bringing a human into the world, and we don’t know how to rest. We ask each other the expected “how are you” at the grocery store and at church, but do we really want the honest answer? 

It has taken people like my parents, Katie, and my husband to show me that I am worth the time it takes to fully heal. I am worth the honest answer and the long road. I am worth the uncomfortableness of not knowing how to respond when I give the “same as yesterday” answer for the 10th day in a row. My invisible pain is a burden, yes, but one worth bearing together. 

The hard work of healing has broken me open. I have been softened and strengthened. Years of learning to listen to my body, to care for it with gentleness and intention, to set boundaries for both my body and my mind, to be okay with doing things differently than culture says is normal. I have come to believe that I am worthy of people’s time just because I am and not because of what I have to offer. I have less to prove and more to give. I am confident that I am a better wife, mom and friend because of my pain, not despite it. 

After almost twenty years of battling my health, I feel more sure than ever that saying “I see you” is one of the best gifts we can give to one another. It doesn’t always mean we understand. It doesn’t mean we have the answers. It simply means that in a culture that is quick to leave, we are willing to stay. 

So to you reading this who are struggling with your own health journey… I see you. You are worth people’s time simply because you are. 

And to you reading this who are struggling to understand the invisible pain of a loved one, I encourage you to make a call or send a text. “I see you.” It might be the beginning of a different kind of healing. 

Let’s be people who get comfortable with the discomfort of honest answers and the long road home.