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To the Person Who Thinks I'm Healthy Because I Tried Today

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Yesterday, you saw a Facebook photo of me at a national park. You wondered how, if I am truly ill, I could possibly be hiking. How could I be enjoying myself if I’m sick? How could I have the energy to go on a hike if I don’t have the energy to hold a job?

But what you don’t know is that I pass on many experiences and opportunities because I am sick. Some things are too difficult, some things are not worth it, and some things could be detrimental to me. What you don’t know is that having a chronic illness is like losing every part of what made you who you are. Sometimes I feel like I’m reaching out for a tiny thread that is tied to life — not life itself (because I’m here, I’m living, I’m on Earth) — but to what living life actually meant to me before I got sick. And I’m trying to grasp that thread that connects me to my old self and to what I love to do and hold it close, because I know what makes me a person — what makes me me — is almost gone. I mean, is a life really a life when it doesn’t have goals, dreams or desires? Or no hobbies or social outings? No ways to express itself? No means to take care of itself? No ability to give of itself? Because I am very close to losing every single one of those things. 

It happened gradually. The more the pain, the more I lost. I started out with hopes and dreams (like my dream to hike the Pacific Crest Trail) and I quickly realized that most of those dreams won’t happen because of my pain. Then (just so I’m not constantly sad about those wasted dreams), I began to push the dreams away and forced myself to forget about them. I pushed them further and further away until I finally realized that I barely have the ability to dream anymore. It is difficult for me to think of anything but my pain, and my only dream now is to lessen that pain.

So I began living day-to-day, but not in the “live in the moment because no more worrying yada yada” way. I live day-to-day as in, “I’m in so much pain and heartache that I can’t see anything but what’s bad right now.” The only thing I can ever wish for is relief. I’ve become a prisoner in my own body. There are shackles tied to every limb, every finger, every bone, every cell. 

So when you see me try, you think it’s because I’m feeling better. This is so very false. What you are really seeing is me reaching for life — a shred of dignity, a glimpse of community, a blink of self-sustainment, an ounce of distraction. It’s that thread tied to life that I’m reaching for. When I’m able to have a half-day’s worth of a normal life, it’s because somehow, that life-thread was blown towards me in a small gust of wind, and I was able to hold onto it for a split second. I grasp on in order to remember what it’s like to be human, to live life, to have hopes and dreams.

And holding on to that thread tied to life is so great and thrilling, and in that moment, I can’t even feel the rope burn I’m getting! The wind in my face actually feels good! Until I can’t grip it anymore, and it’s over and I fall. And I suddenly feel the rope burn. And I’m hurt from the crash, because in the thrill of grabbing on, I swung too high. And was the wind that cold before? 

Through it all, I find myself grateful for the gust of wind that enabled me to grab on, grateful for the thrill of the swing, but I’m wary of grabbing on like that again. Because, although I remember the fun and how good it felt in passing, I also remember the pain afterwards. And with each swing, the pain gets worse and worse. 

So while that life-thread is there, in my sight, almost (but sometimes completely) out of reach, I don’t always take it when I can. The price is very high for such a short ride, and sometimes, the reward is not worth it. And I’m afraid if I put too much strain on it, the thread will completely break.

Though it is harder and harder to grasp onto, I will try my best to always reach for it after the pros and cons are carefully measured. So please, let me have my life-thread, let me have my once-in-a-blue-moon ride without judging me or calling me out. I can’t imagine a life without living. You shouldn’t imagine that for me, either.

Originally published: August 17, 2016
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