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Why I Don't Worry About 'Getting My Hopes Up' With Chronic Illness

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I have had myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) for 18 years now, which means I’ve dealt with it my entire adult life and a significant chunk of my adolescence.

I am considered one of the “lucky ones” with this diagnosis. On good days, I can still drive, perform most personal care and go to my part-time job. According to the disability administration, I am “too well” to qualify for disability. On the other hand, repeated painful experiences have proved I am too sick to work even 20 hours a week. I keep going financially thanks to support from my parents and husband. I keep going emotionally thanks to my optimism in finding a cure.

I endlessly follow ME and CFS studies while raising money for promising research. When a cure seems too far away, I chase down treatments for individual symptoms — nutritional supplements for mitochondrial function, a cardiologist for the orthostatic intolerance, elimination diets for the brain fog.

I have rules so I don’t get hurt along the way, the most important being I won’t try treatments if they don’t have scientific evidence. I look for legitimate source citations and won’t try anything anecdotal unless it has statistics to back up the claims. I make occasional gains, but hit more dead ends. Irrational as it may seem, I retain my optimism.

My loved ones worry I will get my hopes up, and they hate getting their hopes up on my behalf for what feels like a long succession of disappointments.

The thing is, I want to get my hopes up. I need to get my hopes up.

I’m not discouraged by the failures. I talk about Edison inventing the light bulb; each failed experiment, he believed, pushed him closer to a solution.

Many people with chronic illness, especially those for whom a disease will be fatal, say “hope” can be dangerous. It’s understandable. However, I am living with ME and CFS and it has taken me and my family’s financial security, my ability to raise children and many of my educational and career opportunities. Personally, hoping for a cure gives me something to look forward to, while losing hope results in going to a dark and dangerous place in my mind.

I appreciate so many wonderful things in the present, but when the pain is too much, I focus on a future breakthrough. I know a cure may be a long way off, but I believe we’ll get there.

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Originally published: July 12, 2016
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