The Challenge of Maintaining Hope in the Dark Moments of CFS/ME
For me, one of the hardest parts of living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is maintaining a hope that things will get better. I am convinced that if I am not careful, the despair I experience on my worst days will destroy me from the inside out. In my healthy moments, I intellectually understand the dark places, but in the midst of debilitating fatigue, there are no rational thoughts.
I understand that I have a blessed life. I know that even among those who have CFS/ME, I am one of the lucky ones. I am still able to work full-time and I spend more time out of bed than in bed. I understand that I have an amazing family and support system and that I am not alone in my fight. I understand that even suffering through fatigue and illness, I have a better life than many people in this world do. I understand that other illnesses and circumstances rob people of time with loved ones in unimaginable ways. Given that, it is even more difficult to explain that all of that intellectual understanding goes by the wayside when I am in the grips of fatigue.
In my head, I have written numerous letters to my family and friends saying goodbye and trying to explain to them why I no longer want to live. It is in the darkest moments when I am too tired to even move that intellectual understanding disappears completely and I am overcome with pain, sadness and despair. I cannot see past the next second much less the next day when I know things will be better. The thoughts that overwhelm me are the ones that remind me how much I have lost. The amount of hours I have spent in bed when I could have been doing other things. The number of mornings I dragged myself out of bed with all-consuming thoughts of needing to crawl back under the covers. The many moments of my children’s lives I have missed because I was too tired to leave my room. The countless times I snapped at them or robbed them of precious moments because I was ill. The time I have spent calculating out how much longer I could push myself instead of enjoying the activity in front of me. The times I tried to pretend that I was just lazy and wanted to “relax” when truth be told, I was too embarrassed to admit that I simply could not move past my bedroom that day. In those moments, hope is fleeting and I imagine everyone else would be better off without me. In those moments, death feels more like a welcome relief than a tragic end.
In my healthy moments I cannot imagine not living my life… not seeing my children grow up… not growing old with the love of my life. But I have to climb out of the illness in order to see clearly and think rationally. Every time I go down, I wonder if it is worth it. I wonder if the day-to-day struggle and the recent realization that I may never be healthy again, will be the end of me or if rationality will win over and I will continue to survive. Hope is fleeting and I cannot seem to keep it in my grasp for any length of time. It comes and goes. It used to be what I tried to hold onto and now it is what I try to reach out to. It regularly slips through my fingers and leaves me gasping for breath.
As elusive as hope seems to be for me now, I am confident I will leave this piece of writing and go about my day under the cloak of invisibility. I will spend time with family and friends and they will have no idea the hopelessness I feel in those moments of fatigue. I will continue to interact with friends, family and co-workers daily and no one will suspect that despair over takes me on a regular basis. No one will understand that underneath my daily facade, I hurt in ways that makes me question my will to live.
Luckily, I have been at this long enough to know that those moments of desperation are as fleeting as the elusive hope I seek to hold onto. I understand that those dark moments will dissipate and I will move forward into the light. I am confident in my ability to keep pushing forward despite the irrational thoughts that invade my fatigued brain on those torturous days. As I come to this point in the page, I step back and reflect on this last paragraph. When I do, I realize that perhaps the hope I seek isn’t that elusive after all.
If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741. Head here for a list of crisis centers around the world.
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Thinkstock photo by Marjan_Apostolovic