The Losses and Gains of Chronic Fatigue Syndrome

I posed two questions to my myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) online community.

1. What have you lost from ME/CFS?

2. What have you gained from ME/CFS?

I was looking for answers on whether any meaning could be made from our health struggles. I know this is a concept I’ve grappled with, time and time again. Amidst the fires of burning loss, could something in fact be born?

These were some of their answers.

1. “I have mostly lost time — time with friends, family, for myself to do everything I want. I most definitely gained my amazing husband. My vows included, ‘I love you because illness is not something you put up with, but something you help make easier without even trying.’” – Gemma M.

2. “I lost the me that wore hiking shoes with excitement, socialized with ease, delved into beloved novels with joy, and the me that painted with abandon. I have gained learning not to be so hard on myself and other people. I am stronger than I thought I was. I am still here.”  – Nancy S.

3. “I’ve lost an income. I gained the ability to live a life not structured by an income.” — Nina E. K.

4. “I’ve lost the opportunity to have as many kids as I wanted, to make the kind of memories I want to make with my son, to pursue the career I trained for and am still repaying student loans for. I’ve gained an appreciation for living in the moment, for the advocates who speak up in the face of ignorance and apathy, and for the people for whom it takes great effort to get through each day.” — Dana B.

5. “I’ve lost the me that was strong, a rock, a provider, the feeling like I could change the world and be anything for anyone – a “tough up” and move forward kind of man. Now I am the one who needs a rock and needs support. I’ve gained strength, unbelievable strength – not physically, but mentally.” – Robert V. F.

6. “I’ve lost everything I had, with the exception of some books and my partner. But I’ve gained compassion, a lot of knowledge, and I’ve been given the opportunity to learn how to build healthy relationships.” – Sarah D.

7. “Lost: bad friends. Gained: genuine friends.” – Sakara D.

8. “I’ve lost the ability to be outgoing and to enjoy the company of people as much. I’ve gained the understanding that not everyone is going to understand, or be compassionate. I’m learning it’s not all about me, or ME/CFS.” – Jane G. E.

An illustration of a woman walking through a forest.

9. “I’ve lost pretty much any sense of freedom, independence, security, adventure, my body shape, and most relationships. Although depression is in the foreground, I can recognize I’m badass for persevering.” – Deborah J. S.

10. “I’ve lost many things including the strength for a tidy room, and interaction with nature. I’ve gained cyber-friendships.” – Leslie R.

11. “I have lost much of my youth, people I thought were my friends, and nearly my life at one point. I have gained the ability to ask for help, learned forgiveness, perseverance, and patience.” – Elle H.

12. “I lost the chance to have my own family. I gained loads of time with loved ones; especially at critical times in their lives.” – Lorna L.

13. “Yes, I’ve lost the person I thought I’d be, the things I thought I’d do, but I have gained a lot as well. Sometimes I feel that this illness has given me a chance to understand myself better, to strip back all the things that were just surface material, and discover who I really am.” – Michelle W.

Being sick broke my heart, but it also broke my heart open. Every role that defined me was lost, until I felt I had nothing left to lose. There was no way around the massive changes of my outer world; without a journey into the woods of change and transformation of my inner one.

Adversity forced me to venture into unknown territory. This dark place introduced qualities of myself I had never met before. It was painful and it was difficult. I needed courage to face what I could not control. On this path is were I retrieved my soul and forged a new identity and meaning. It is here a second chapter of my life was born — a deeper one led with more purpose and greater kindness. This self could only be found when the former was lost, and the straight path gone. Maybe this is what is to be gained by the difficulty of walking through these woods. Maybe these woods hold the key to our own hearts, waiting to be opened.

Here’s a beautiful Ted Talk, by Katie Mazurek, that speaks to finding meaning amidst health struggles.

I invite you to ask yourself these two questions, and to explore your answers.

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