Snowdrop
Rebel without a biscuit
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I can't remember all articles that have gone by so don't recall if there have been some bad press from Huffpost but I think in general they have been a friend to the ME community.
See article here: http://goo.gl/RrNUl9
Article title: The Faces of ME: Missing 7 years of my life
Quote from the article:
Generally, when I talk to people about Lilan and ME/CFS, they want to change the subject. I get it. It’s taken me an entire year to write this article – and it’s not just because it’s difficult to connect with Lilan due to her illness or because I’ve had other projects.
There is another reason.
Researching this disease is difficult. I read about a patient’s suffering, watch a documentary, or scan a research article, and I have to step away. I feel overwhelmingly sad. And worried. I start to worry that every little ache, pain, or bout of fatigue is a sign that I, too, will stumble into a darkened room, never to reemerge. While that may seem ridiculous, I know the truth: No one is immune. As Lilan recently wrote on her Tumblr page (after more than a year’s absence):
I did not know, so many years ago, what it means to watch the pieces of yourself get shaved away, the so-you-you-always-took-them-for-granted pieces, the closer-and-closer-to-the-core-pieces.
The loss is immeasurable.
And I am afraid.
See article here: http://goo.gl/RrNUl9
Article title: The Faces of ME: Missing 7 years of my life
Quote from the article:
Generally, when I talk to people about Lilan and ME/CFS, they want to change the subject. I get it. It’s taken me an entire year to write this article – and it’s not just because it’s difficult to connect with Lilan due to her illness or because I’ve had other projects.
There is another reason.
Researching this disease is difficult. I read about a patient’s suffering, watch a documentary, or scan a research article, and I have to step away. I feel overwhelmingly sad. And worried. I start to worry that every little ache, pain, or bout of fatigue is a sign that I, too, will stumble into a darkened room, never to reemerge. While that may seem ridiculous, I know the truth: No one is immune. As Lilan recently wrote on her Tumblr page (after more than a year’s absence):
I did not know, so many years ago, what it means to watch the pieces of yourself get shaved away, the so-you-you-always-took-them-for-granted pieces, the closer-and-closer-to-the-core-pieces.
The loss is immeasurable.
And I am afraid.
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