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The One Phrase That Helps Me Deal With the Uncertainty of Chronic Illness

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Life with a progressive disease, like mitochondrial disease, can be scary and remarkably uncertain. That frustrating uncertainty makes it difficult to plan for the future, whether we’re talking a few months or several years. Putting money down on a vacation or concert tickets feels like a gamble! When I get down to the serious subjects, such as anticipating accessibility needs and caregiving, the stakes get higher. My family is addressing my mobility needs by making changes to our home right now, and I just transitioned from tube feeds to TPN much sooner than I imagined. Life keeps rolling on, and I’m trying not to get crushed by it. Lately, I’ve been thinking about how to manage all the uncertainty about the future. Three main points come to mind: staying informed, addressing each health issue as it develops, and finding interests and activities I can participate in right now. Nothing lasts forever—positive or negative—so I cross each bridge as I come to it.

Staying informed is important, and it doesn’t necessarily entail reading articles past midnight. Personally, I find that taking a look at new scientific findings on a monthly basis is enough. There’s no cure or effective treatment for mitochondrial disease at the moment, but researchers are working hard. Reading about studies and trials reminds me that people are actively looking for ways to improve the lives of people with my condition. When I see my specialists, being informed allows for better discussions about the future. There may not be anything we can do to drastically improve my symptoms, but it’s not for lack of trying. Knowing that helps me to focus on doing everything within my power to take care of my body, and it answers questions that might otherwise keep me awake at night.

Addressing each health issue as it develops is a realization of my commitment towards taking care of my body. Denying the significance of my disease has only ever brought me deeper grief in the end, so I try to face problems as they arise. Instead of putting off medical appointments or procedures until the problems increase and get more complicated, I show up for my body. That means going to appointments, educating myself, and making informed decisions with my medical team. I know my body better than anyone else, so I speak up if something feels “off” or if an intervention that helps other patients is contraindicated for me. There will always be another clinic appointment and hospital admission, but focusing on the most pressing issue enables me to be a stronger self-advocate. I find it constructive to put short-term parameters on some health conversations, and to save the discussions of long-term issues for more appropriate settings.

I prioritize personal interests and activities when planning medical procedures with my team, as having a creative outlet is vital for my overall wellness. All of that frustration has to go somewhere, and it’s amazing to realize that pain and fear can be transformed when woven into a beautiful or moving creation. Acknowledging those uncomfortable feelings and channeling them into a healthy activity can shift or lessen the weight of uncertainty. Writing is my main outlet, but visual art and music are also great options. Art therapy was very helpful for me a few years ago. Other activities, such as crafting and reading, take my mind off of my health challenges entirely for a little while. Over time, I adapt my activities to fit my changing physical abilities. It’s OK if an activity stays in one chapter as I move towards the next. Then, I’ll find a new outlet that sparks my soul and fits my needs.

Nothing lasts forever, and that honesty can be refreshing. It’s a bittersweet thought, too. Just as the sun sets on delightfully joyous days, it also dips to rest below the horizon on the most painful days. I’m still learning to savor these days, when my body is weaker than it was two years ago, but stronger than it will be two years from now.

It’s a cliché, but all I truly have is this moment.

The hardest days haven’t happened yet, and staying present will allow me to catch my breath before I meet them. Projecting too far into the future can cause the weight of uncertainty to ramp up again, and I rely on friends and family to help keep me grounded in today when it all starts to feel too overwhelming.

Crossing each bridge as I come to it is the best I can do, and it’s enough. Life is happening now, and I’ll take in the full view from the bridge before facing whatever challenge waits on the shore.

Originally published: April 25, 2019
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