“I don't want to have this illness,” I cried out to the doctor and social worker who stood nearby.
“ I hope with all my heart that with the 10 percent chance that I have something else, that I will find out I have something else. Many patients with cfs wish they had cancer instead. That's how bad this illness is.”
The doctor got paged out, but the social worker sat listening still. I wish I'd picked up then that her attention was wavering, that she longed to escape the confines of this room where depression loomed so large, unable to be shaken out by the piercing fluorescent lights. I wish I'd known then, or I wouldn't have put my whole heart on the table. Instead I began to count out the reasons why I needed to not have cfs.
- There is still very little knowledge about cfs
- There is instead vast amounts of misinformation about cfs
- There is a lot of stigma about cfs, with most doctors falsely believing that it has a psychological component.
- There is no cure for cfs.
- There are still no approved evidence based treatments for cfs
- Worst case scenarios… I end up tube fed or on an oxygen mask for the rest of my life, or even die from complications of the disease
- The average life expectancy is only 48 years old.
There had been a darkness in my voice all the way through, a thread of despair. I was vulnerable, open, willing to be seen.
“Right,” she said, “ I'll give you my card.”
I had been vulnerable, open, willing to be seen. Now I was crushed, and crawled back into my shell. Rejection and humiliation hung over me like a thick goo.
I'd given her my story, and she'd turned away.
I'd put my heart on the table, and she'd crushed it with a thousand weights.