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The Price of Feeling Completely Understood When You Live With Chronic Illness


As humans we long to have someone relate to what we’re going through, to be accepted and understood. For a very long time I didn’t have to work very hard to achieve this feeling. Nowadays, it’s something I want desperately, but I know that to have it comes at a price I can’t ask of anyone.

There’s a certain amount of comfort in the known. But, as there’s very little known about lupus, I find myself stuck in a state of discomfort. Though medicine works tirelessly to provide us with answers, there is still very little known about the black wolf that millions of people carry with them, each and every day.

I talk about lupus openly and with as many people as I can, but there’s always a certain part of the conversation where I hit an abrupt dead end, and I can pinpoint it as the exact moment someone asks about a cause and cure. It’s at this moment I’m left speechless and almost ashamed, as I’ve been rendered unknowledgeable about my own debilitating condition.

Doctors can tell me about the typical symptoms, the side effects of all the necessary medications and even how lupus is likely to affect my life and lifespan. But in no way does this mean they understand what it’s like to live with lupus.

I am surrounded by people who constantly try to understand what I go through as a lupus warrior, but there are so many times when I wish my best friend or my family could do more than just sympathize with me.

When I’m frustrated and emotional about my situation, feeling as if I’m actually crying parts of my heart and soul out of my eyes from the hurt my condition causes me, I think I want empathy. But if I’m completely honest, the only time I feel properly understood is when I’m talking to someone else with my illness – and I could never wish this hell on anyone, let alone my loved ones.

Every now and then the isolation of being different than the majority of the world haunts me, but I’d choose to wear the pain of isolation each and every day, as I know what the cost of empathy would be.

Parts of me will always long to be understood the way I used to be, to know that for the most part my experience was the same as everyone else’s. At the end of the day, acceptance and understanding are a basic human craving that everyone is prone to, and though I try often to pretend I’m superhuman, I’m not exempt from that.

Thanks to lupus, I’m destined to spend my life feeling different from almost everyone I know, and to likely never again feel like I properly belong anywhere. I’ll live my life walking the line of a predicament. I’ll never be able to shake the longing to be like everyone else and be understood, unable to bear having someone close to me be condemned with lupus, too.

This post originally appeared in Kristiana Page’s column, “The Girl Who Cried Wolf,” on Lupus News Today.

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Thinkstock photo via littlehenrabi.