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Where Is Your ME/CFS Recovery Journey Taking You?

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“All journeys have secret destinations of which the traveler is unaware.” – Martin Buber, The Legend of Baal-Shem

When I saw this quote from a Jewish philosopher in a novel, it struck a chord. It is perfectly applicable to these unexpected journeys we are all taking with chronic illness. It is easy to fall into the trap of focusing only on what we have lost, but, as Buber points out, this journey can take us to places we never expected. While I would never have chosen living with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), defined by restrictions and limitations (especially for my sons), when I stop to think about this journey, I realize that it has brought surprising benefits. There are indeed “secret destinations” of which we are often unaware.

Bringing Our Family Together

While our extended family have struggled to understand our chronic illnesses, our family of four – of which, at one time, three of us had ME/CFS – developed a rare closeness. In those early days, with most of us sick and often housebound, we developed a very positive family dynamic. We took care of each other, and we were often the only company we had, so we enjoyed being together. We spent long sick days when the ME/CFS symptoms were intense watching favorite TV shows or funny movies, reading together, or occasionally playing a game when our symptoms weren’t too severe. That closeness we developed in those early years formed a strong foundation, and now that our “kids” are young adults, they still enjoy spending time together.

Developing Compassion and Empathy

Becoming chronically ill greatly increased my level of compassion for others. With a daunting challenge invisible to others, I began to realize that everyone has their own challenges, and they are rarely obvious. Chronic illness taught me that when I meet someone, I never know what he or she might be dealing with behind the scenes, so it’s best to treat everyone kindly.

Getting sick at ages 6 and 10, our sons grew up with unusual empathy for kids. Knowing what it was like to feel awful, to live a life filled with restrictions, made them far more understanding when they encountered others with disabilities or challenges. Over and over, people complimented us on our kind boys, how they were great with younger kids or the elderly.

Slowing Down

Before ME/CFS, I was an energetic extrovert in constant motion. I did – and still do! – struggle with perfectionism. As a result, I put a lot of pressure on myself and my family to do everything and do it all well. After my diagnosis of ME/CFS a year into my illness, I learned about exertion intolerance and realized I had to make some big changes in my life. I had to stop pushing myself so hard or I would sentence myself to constant “crashes.” I had to slow down if I was to ever experience any recovery from ME/CFS.

Though it can be frustrating, there is a certain freedom in not being able to do everything. We started saying “no” to less important things. The kids did only one activity or sport at a time (when they were able), I had to stop volunteering at school, and we had to build plenty of downtime into our schedules. Our enforced slowdown had many positive effects, including a more relaxed lifestyle, more time together, and plenty of free time for our kids to play and be creative.

Making New Friends

About four years into my illness, I started a blog about living with chronic illness. When the first person left a comment, I was thrilled to have found someone else who “got it.” Over the past 10 years, through my blog, Facebook groups, and Twitter, I have met hundreds of people dealing with the very same challenges that we deal with. Some of them have become very dear friends and we have even met in person; others live on the other side of the world. We all share common experiences, though, which forms a solid base for friendship.

As I learned about others in our area with kids who had ME/CFS and related illnesses, I organized a lunch meet-up for five moms, all with sick kids. That lunch was life-changing for all of us – we felt like old friends by the end of it. We soon planned a dinner so our families could meet. We now have a couple dozen families in our local group. Recently, the original five families got together. Though we still talked about doctors, ME/CFS treatments, and school issues, we have become far more than a support group; they are now some of our closest friends, and we laughed and talked through our reunion dinner.

Helping Other People

I started my blog as a way to meet others, but it turned out to be a way for us to help other people, too. We’d seen some of the top ME/CFS doctors and had tried a wide variety of different treatments, and I discovered that not everyone had those experiences. In addition to the blog, I started several Facebook groups where people with these illnesses could interact. Desperate parents who didn’t know how to help their children could talk to other parents all over the world and gain not just emotional support but also practical advice.

Besides the online communities, that local group we started has had far-reaching effects beyond anything we dreamed of. Some of those local teens are housebound and isolated, but now they’ve made new friends – friends they don’t have to explain anything to – and that has been life-changing for them. Five of the seven sick kids from the early days of our group are now young adults who are attending college, thanks in part to sharing information about doctors, treatments, school accommodations, and ME/CFS recovery. Besides the friends we’ve made and the support we’ve gotten from these groups, being able to help others living with ME/CFS makes our own suffering feel more worthwhile.

Where Is Your ME/CFS Recovery Journey Taking You?

Have you ever thought about the unexpected positive effects of your own illness? It’s easy to focus only on what you are missing, but take a moment to consider what you may have gained from your journey with chronic illness:

  • Has your illness brought you closer to a partner, friend, or other loved one?
  • Does your new life allow you time to enjoy things you were too rushed for before, like reading, watching good movies, listening to music, or appreciating nature?
  • Have you learned any new skills or found new pastimes, like knitting or online games?
  • Have you made new friends, in person or online, as a result of your illness?
  • Do you have an improved attitude, with more compassion for others?
  • Have you been able to help others by sharing your own experiences online?

Though none of us would choose a life of illness and restrictions, this unexpected journey of ours does have some “secret destinations.” Take a moment to recognize what you’ve gained as well as what you’ve lost. Where is this journey taking you?

This article was first published on ProHealth.com on June 4, 2016 and was updated on December 26, 2019.

Suzan Jackson, a frequent ProHealth contributor, is a freelance writer who has had ME/CFS for 13 years. Both of her sons also got ME/CFS, but one is now fully recovered after 10 years of illness and the other is in college, also dealing with three tick infections. She writes two blogs: Learning to Live with ME/CFS (with an emphasis on LIVE!) at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com. You can follow Sue on Twitter at @livewithmecfs.

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