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To Those Who Live the Free Lifestyle I Used to Have Before Chronic Illness

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I’m so used to a life of chronic illness that I can’t wrap my head around that free, minimal worry, “go, go, go” lifestyle. At one point that was my life — the life the people around me are fortunate enough to live. I miss it more and more with every sacrifice I must make. It is frustrating and depressing to know what you are missing out on and to know that what was once your life can never be anymore.

Just as I have adjusted and learned to live the the life of someone with a chronic illness, the healthy people around me only know what they have been through. I can imagine how difficult it is for you to understand and look at things from my point of view. After all, you are not living my life, you are only witnessing it and only so much is visible to you. Having your support and understanding would make fighting through every day a bit easier.

There are some common misconceptions and significant differences between my life and yours that I would like to bring to your attention. From the second my day starts I begin fighting. Simple tasks like getting out of bed and getting myself together require so much strength and energy for me that they are equivalent to you running a few miles or doing your morning workout. Imagine starting out every day like this, and imagine how low energy you are before your day has even begun. That is just the fatigue part that comes with many illnesses. We face not one or two but several challenges on top of this; every single hour, minute, second of the day, we are fighting.

Therefore, next time you call me lazy or we can’t come to agreement on a night in, please keep in mind how physically drained I truly am. Unfortunately, it goes beyond being tired physically. Fighting constantly and knowing there is no end to the fight takes a toll on your mental health. One hundred percent of the time I am physically and mentally drained, and I can assure you that goes for everyone fighting a chronic illness.

Please familiarize yourself with “The Spoon Theory” by Christine Miserandino. To make a long story short, it is an analogy between spoons and energy. Every day the chronically ill wake up with a set amount of spoons. Throughout our day, our spoons vanish rather quickly,  leaving us with barely enough energy to get through crucial daily tasks. Ultimately we must think before we do, even with the littlest of things, all in hopes of conserving our energy so we can make it through the day.

black and white photo of woman sitting on fence in nature

Next time, instead of ostracizing me for something that is out of my control and guilting me into feeling like a bad friend or family member, please take a minute. Take a minute to step back and view the situation with an open mind to benefit the two of us. Look at it from not only your point of view, but put yourself in my shoes and think about what you would want in my position.

I understand it can’t be easy. It’s like asking you to one day understand a foreign language. This is my life and if you want to stay in it, you must show me you care for me, want to understand, and will support me. It is OK to say you don’t get it. I don’t expect you to, although I do expect as a loved one of mine you try your best and view everything with an open mind in the future.

It hurts me to know I can’t be that same person to you I was before chronic illness set in. It’s something I’m constantly in a mental battle with. I would like to leave with a pinky promise: I promise I will do my best to be a better and healthier me if you promise to be patient, support and love me. I wouldn’t be sharing this letter with you if you were not important to me. Please, for me, make an effort to understand and don’t give up on me. I love you.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Originally published: April 3, 2016
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