“The Stolen Martyrs” - A Letter to our Healthy Allies
We die when we become too sick to live our lives.
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But because we aren't technically dead we die silently, our relatives and friends who understand spend their energy caring for us rather than raising awareness.
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By the time we physically die, everyone is done grieving. We never become martyrs, the disease remains unknown.
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How do you raise awareness of a disease with no martyrs? Grief is the engine behind so much disease awareness. MECFS steals our grief and steals our martyrs.
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If your loved one is diagnosed with MECFS and you are grieving the loss of their health, fight for them NOW. Fight while you still have fire in your soul. Fight before that flame of anger and passion and rage at injustice is snuffed out by the slow tedium of decades of dark endless suffering.
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1 in 100 people suffers from Myalgic Encephalomyelitis a debilitating neuroimmunological disease also known as MECFS.
3 in 4 people with ME are too ill to work.
1 in 4 are completely housebound or bedbound.
Severe ME patients have a worse quality of life than chemotherapy patients or those with late-stage AIDS.
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We die silent deaths in dark rooms decades after our lives are over.
This is something I have been struggling to convey to my healthy friends and allies. For those of us with severe or very severe ME our lives end when we become too severe to do anything we love or care about. That is when grief in both ourselves and our loved ones kicks in.
It is a morbid fact, but nonetheless true that successful illness, awareness and research funding campaigns such as cancer and AIDS are often driven by the grief of those who have lost loved ones to the disease.
But in MECFS that grief is dissipated over the decades of slow decay and loss. It dies in the dark rooms we sit in as our loved ones are bound by the responsibility of caring for severely ill patients with minimal government and societal support. By the time we finally die our allies are exhausted from the day-to-day struggle of caring for such a disabled patient, often for decades. They have already grieved the loss of their loved one, the loss of the empty shell of a person who finally remains when ME takes us away is not a triggering or motivating event for most.
So to those of us who love someone with ME, CFS, Long Covid or another similar chronic illness and are still experiencing the grief of diagnosis and watching the person you knew vanish before your eyes, I have a message for you.
FIGHT. Fight for us now! Go to millions missing protests. Fight to publish NICE guidelines before it is too late. Run fundraising campaigns for Open Medicine Foundation to help us find a cure. Fight the fight that ME holds us out of. Do the work we are lying in bed desperately wishing we could do.
I know it seems like the most important thing in the world right now is taking care of your loved one. But equally important is stopping this cycle of neglect and abuse. We struggle to tell you this because it is hard to tell someone to not focus on you when they are trying to be compassionate. It is hard to tell someone "I am only one of many" when you can see how hard they are trying to make your life worth living. We will survive. We have no other choice. Help others have one.
