I Make Sure My Support System Is Strong

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by Leah Leilani |

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farewell, support system, tiredness, single, ableism, angels, independence, crip camp, redefining success, introversion

When I’m deep in thought, reflecting on my life, I shudder to think who and where I’d be without the support of my family and friends. Whether I need a shoulder to lean on or simply a sounding board for my own jumbled thoughts, I can trust that the people closest to me will help me through. I will say, though, that establishing and maintaining a circle of people I consider qualified enough to call my support system hasn’t been easy.

Over the years, I’ve become much pickier about who I permit to enter my little circle. In the early stages of my life with mitochondrial myopathy, there were many people I thought would stick by me. I soon realized that these people were only posing as my friends.

I sometimes feel as though my disability is a filter, revealing the true colors of those I meet and weeding out the ones who aren’t really there for me. As I’ve gotten older, I’ve developed gratitude for my disease’s ability to ward off unwanted guests. Unfortunately, people aren’t always easy to read, and I have to make the difficult decision of whether to keep them in my life.

One of the most valuable lessons I learned in 2020 was to trust my instincts. I can usually sense a good connection with someone early on and detect red flags easily. But my need to please others hinders me from cutting the cord on relationships that drain my life rather than add to it.

I often make the mistake of putting all my love and effort into relationships without an equal return. I’ll find myself justifying the bad moments for all the good ones, reassuring myself that it’s all worth it in the end. In these situations, my fixation on being liked distances me from the opportunity to be happy.

The most gratifying relationships, whether with a family member or friend, have always been the ones that take the least amount of effort but add the most to my life. The people who are dearest to me are not, and never were, intimidated by my wheelchair or the disease that comes along with it. In fact, these things may as well be invisible to them. They’ve always seen me first.

The people in my circle are also the ones I sparked a connection with the moment we met, and that spark has yet to fade. To this day, my prominent friendships are with the five people I met way back in middle school. Before COVID-19, the guests at my backyard gatherings and parties consisted of these five people.

I don’t expect everyone in my life to comprehend a complex disease like mito, or what my daily life with an energy deficiency consists of. Nevertheless, my friends understand that plans sometimes have to change due to my health and that I may need to cut a get-together short. Not once have they questioned my needs or shown a hint of condescension.

Tears have been shed and sleep has been lost over those I believed I could count on. What matters most is that I prioritize the few loyal friends and family members I do love and who love me. I might not have the biggest family or the most friends, but I’ve learned to appreciate quality over quantity.

I would like to close this column with a quote from author and finance expert Nathan W. Morris: “Edit your life frequently and ruthlessly. It’s your masterpiece after all.”


Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.


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