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How I'm Learning to Live a Mighty Life With Chronic Illness

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People with chronic illness struggle with all of the misconceptions that are directed their way – both by strangers and by themselves. Many of us were once athletes, musicians, crafters, and Type A workaholics. We would never have been labelled “lazy” before our illnesses took away our strength, our mental acuity and our choices. Learning to live a “Mighty life” is difficult. It means letting go of your prior capabilities and focusing on the capabilities you have. It means embracing a new world of activities that looks very different from your old world. It means letting go of your own misconceptions of what life should be like.

• What is Ehlers-Danlos Syndrome?
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My story is not unique. As my body began to fail from autoimmune disease and Ehlers-Danlos syndrome  (EDS, a connective tissue disorder), I had to let go of many things. I stopped playing soccer, martial arts, horseback riding, painting, writing, and, finally, working. I felt like the disease was stripping away the person I always knew myself to be until a stranger looked at me in the mirror. The things that I felt defined me eroded away. I felt untethered and I didn’t know who I was anymore. Clearly, something had to change. I had to dig deep and find the core things that made me who I am and build on those until I had a life I could live with.

I have always been driven. I liked to say that I worked hard and I played hard. I was creative and smart. I was sporty. I was always doing something, whether it was playing the piano or redecorating my house, roller skating or preparing a new presentation at work. I have let those things go, but found I could reclaim being goal oriented and focused on health and creativity. Those goals gave me some meaning for my life to break up the endless days that all seemed the same.

Recently, I began an exercise regimen with a trainer at a gym. I am exercising with people who have a wide range of fitness. None of them have experienced the total muscular devastation that EDS has afflicted me with.  None of them struggle with the daily profound fatigue and pain that I experience. It is daunting to engage in an exercise program with “normal” people when you have profound chronic illness.

I worried about perceptions, although I shouldn’t have. Will people think I’m lazy because I can’t run and need to modify a lot of the exercises? I decided to go for it anyway, because I really need it. I feel lucky to have this program, because everyone from the owners to the trainers to the other participants is so generously supportive. They help me stay positive as I strive to maximize my health. Embracing a healthy lifestyle for me means I am giving myself the foundation for the life I choose.

For me, living a Mighty life also means challenging myself to find projects and activities that I am enthusiastic about, but which are within my capabilities. That has been extraordinarily difficult for me, but, I work hard at it. I decided recently to create a large mosaic fountain in my back yard. I can do the work seated and get help from my family for all the things that are beyond my capabilities. I need to be challenged. This project is just the ticket.

Living a Mighty life looks different for every person. But the thing we all have in common is that we let go of the misconception that our life has to be less. Our lives are significantly different, but they do not have to be less. We owe it to ourselves to ensure that they are not. Be Mighty.

Getty Image by phaustov

Originally published: July 4, 2018
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