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The Bittersweet Journey of Chronic Illness

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Like most things in life, the chronic illness journey ranges on a spectrum of negativity and positivity. I often hear people describing their chronic illness experience as both a blessing and a curse and that is exactly what being chronically ill means to me.

This bittersweet feeling I so often experience first arose when I was diagnosed with my initial illness. A sense of relief flooded me; my symptoms were validated. I remember thinking that being diagnosed was a cause for celebration. The relief and excitement of finally having answers quickly wore off after realizing the reality of having a chronic illness.

The bittersweet feeling hit me hard a year after being initially diagnosed. I organized a fundraiser to raise money for dysautonomia research. My small community came together to donate and bid on items in a silent auction. I beamed with pride and accomplishment, but then I remember thinking, “I wish I didn’t have to do this.” Of course, I was proud to have raised awareness and money for an illness, but I did not want it to be because I so desperately wanted a cure for myself.

As a chronically ill person, I constantly find the silver linings in my experiences. Through talking with many others in similar situations, I have found that we all view the strength we gain from being sick as our major silver lining. As patients, we are forced to be strong and resilient. At the ripe age of 24, I have dealt with things some people never have to deal with. I find solace in thinking I would not be the person I am today if it were not for my illnesses. If I were a healthy 24-year-old, would I view the world the same way? Would I have the same appreciation of life? Would I be able to be as empathetic and compassionate towards others? The perspective I have gained from these unfortunate experiences most likely has shaped my character and in turn, my actions and behaviors.

Bittersweet experiences come around all the time in the lives of chronically ill people. We might spend months looking for a new diagnosis to explain our symptoms and when we finally get it, we may smile with relief. And then we may cry. I think about how much I have put my loved ones through, but I also find comfort in knowing my support system is stronger than most. I look back on the time I had to sell my bike because it sat unused for four years. I felt a rush of emotions as I handed it over to its healthy new owner; I was upset that my body forced me to give up on this bike, but I was happy to finally pass it on to someone who would use it. I can only describe the day I first used a wheelchair as bittersweet. How could I be so excited but so sad at the same time? I was actually going to be able to join my family in a walk, but I was doing it in a wheelchair. The fact that I became sick enough to have to use this aid hit me like a ton of bricks, but then I realized this aid would allow me to be more active. Without a wheelchair, I would miss being involved in things I am passionate about, such as the Women’s March. With a wheelchair, I am able to be more myself than without one.

the author sitting in a wheelchair and wearing a pink hat with a woman standing behind her wearing the same pink hat

For me, seeing chronic illness as both a blessing and a curse is a way for me to cope. Of course, being sick is a curse – the daily appointments, the obscene amount of medication and most of all, feeling out of control of my pain-ridden body. But as I lay in bed fatigued and in pain, I must remember the silver lining to all of this. My insight and appreciation for life comes from the reality of being chronically ill. I gained this perspective because I am sick. I
appreciate life because I am sick. I am who I am because I am sick.

Originally published: May 1, 2018
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