When I Thought I Lost Me to ME


For years now, I’ve dreamed of being healthy again. I know I may never be, but I will continue to dream for it.  I also know that for years that I no longer felt like myself. I felt lost in the pain, the disease, the uncertainty of it all.

A few years ago, I was diagnosed with myalgic encephalomyelitis (ME), a multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. Since then, and ironically enough, I felt like “ME” had stolen me. How I ached to be me again.

As time has progressed and many mindful moments later, I realized that I’ve actually not only have been me all this time, but I’ve been me on full blast. It’s been me, the best in me, that’s gotten me through all this.

In hindsight, I think I felt I lost me because I could no longer do so many of the things I loved – working out, dancing, having a cocktail or two, and living my day-to-day life without hesitation. Now, however, I have realized that I have been able to replace these things with new activities, many that are just as or more rewarding. And when it comes to dancing, I found a new way to dance. Mental happy dances!

What I’ve recently realized is that all this time, me is what was coming out the most. My inner strength has helped me fight battles I knew were in my path and some I never saw coming.

My ambition was redirected and with new friends, has led to the formation of a Minnesota nonprofit organization dedicated to ME – Minnesota ME/CFS Alliance. My caring nature shines bright through this organization’s overall mission of helping others with ME by increasing medical provider education on ME, integrating ME into medical school curricula, fundraising for a cure and providing support and a voice for the 14,000+ Minnesotans with ME.

Lastly, my positive attitude has not only helped me get through my bad days, but it has given me a direction and focus for spreading my optimism, hope, and unending gratitude for the life I still have. I do my best each day to share that hope and gratitude with others, to share strategies for staying positive, and to be a voice of strength during a friend’s time in need.

So, I may have ME, but now I’ve realized it hasn’t stolen me. I am here, more than ever. While my body is continuing to fail me in new and greater ways, I also know I am only getting stronger and more resilient on the inside. I still wish I had never heard of ME and that it didn’t exist for me and all of the millions of others with it. But now I know I just have it – it doesn’t have me.

And it doesn’t have you either. If we can get through a day with ME, we are without a doubt resilient, strong, and powerful in the most important ways.

Getty Image by klebercordeiro


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