The Choices You Have as a Chronic Illness Warrior


Life is full of constant choices. Some are small and meaningless and others are life-changing. The key and beauty of it all is that there is an abundance of daily choices. Every day presents a fresh set of choices and it is up to each one of us to choose our day and what impact on the world we will or won’t make with them.

When you live with a chronic illness, your choices are in some ways much more limited, but there is still an abundance of choices. Sometimes it just takes a bit of creativity and open-mindedness to see them and a little extra courage to pursue them.

As a chronic illness (more specifically, myalgic encephalomyelitis, a.k.a. “ME”) warrior, there are two very contrasting daily realities, but also and most importantly, choices.

Reality: I live each day, each moment in constant pain. Each day ramps up with a random array of symptoms including light, sound and temperature sensitivity. Sometimes a little nausea and back pain is thrown in there. Overarching it all is a never-ending layer of exhaustion beyond what one can possibly imagine. Short-term memory loss is a daily constant as well. Beyond the physical symptoms is the loss of all semblance of my old life. From partaking in my favorite activities (oh, how I miss working out!) to simply grocery shopping it all becomes a mountain of insurmountable challenges. I’ve lost so much independence and freedom.

Perhaps most heartbreaking is that many of my friends have left or they stay but they really aren’t “there.” The isolation that comes with the physical limitations and loss of friendships is perhaps the hardest. The grieving for these losses comes and goes, but it never really ends. Finally, the day winds down by going to bed, laying half awake, half asleep for hours on end until the alarm rings to much relief, and it all starts over again. That is a day in the life for me with myalgic encephalomyelitis.

Reality: Almost every day I put a smile on my face and work hard to make the lives of the people around me better. Whether through my work, raising ME awareness or providing kindness and support to my fellow ME warriors, every day has a goal that extends beyond me. Creating this purpose to my day helps me crawl out of bed and forget my pain for the greater good. Bringing joy, support or kindness to someone’s day makes me forget my own challenges and adds a bit of brightness to my day. It all makes each day worth pushing through the pain.

Almost every day I have a choice of which reality is going to dominate my day. I make a conscious choice and then push forward. Granted there are days that ME and all that comes with it is just too much to overcome or I’m just too exhausted to try to do so, and on those days I indulge myself in all the self-care I can give myself. And when the sun rises the next day, I make my choice again.

Everyone is affected my ME in different ways. However, whether from your bed or your workstation, acts of kindness are almost always possible. It’s not the size of them that matters, it’s the thought and quality of them. The power of one is amazing, even when the “one” has limited options. For anyone struggling with a chronic illness, please don’t underestimate your abilities. You overcome incredible challenges daily; you are amazing, strong and tenacious! That is how I can confidently say that this too is possible for us all. And the warmth in your heart from helping another will help make the rest a bit more tolerable.

Choices are there for us all, both for chronic illness warriors and those in good health. It’s what you do with them that counts. We are our choices!

Note: Myalgic encephalomyelitis is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. To learn more about the debilitating effects of myalgic encephalomyelitis, please watch Unrest, an award-winning documentary film that tells the story of how Jennifer Brea faces head-on her myalgic encephalomyelitis condition. It’s available via iTunes and is also streaming on Netflix.

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