Expanded from the original article by Dr Robert Bransfield written earlier this year.
Finally, this epidemic within a pandemic is being recognized.
The first few years of my illness, my cats, my mom, and my faith (in different orders and combinations), got me through the rough patches. For a time I also belonged to an online Lyme group devoted to patients who were having suicidal thoughts (I’ve never known anyone admit to being homicidal). There were nights I’ve stayed up late talking to someone in crisis and times I had to tune others out to take care of myself.
I’ve lost two Facebook friends to suicide. I can’t imagine what they experienced that tipped them over the edge. It’s time the suffering this disease causes is noticed and taken seriously.
What I would like to say…
“There are many photos I wish I could post about my condition. I want people to understand what it’s like to be chronically ill – to have deep fatigue, brain fog, aches, pains, depression, and a myriad of other symptoms that you have to push aside each day. I put on a smile to hide my weariness that words can’t really describe.
“My illness is invisible, which is both a blessing and a curse. An invisible illness, meaning one that ordinary people wouldn’t realize based on your appearance and lifestyle, is a blessing because I can have moments where I pretend to be “normal” and have a regular, healthy life like so many people take for granted. But on the other hand, an invisible illness is also a curse because it becomes so much harder to explain to people about my condition and harder for them to understand that I truly don’t feel well.”
For more of this article, please continue…
Though I was not a writer, I mourn who I was. Bad day today. Thank you, mom, for sending me this article, it helped balance me this morning.
“I have not yet learned anything except that I don’t want this, but also that I am this—I am illness just as much as woman, wife, friend, daughter, guardian of two mutts. And because, right now, I am illness—because I have not, as other people promise I will, learned to have a malady rather than be one—it is all I can manage to write about. I am a body in every moment, and my body is all I can think about….
“Pain makes us absolutely self-centered, not in the malignant way of a narcissist, but in the inevitable way of an infant. Pain refuses to allow us to forget our bodies or to amputate them from our selves. Pain’s shrill cry will rise up, louder and louder, if we try to shut it out. Now, I often marvel that anyone is alive at all. There are so many things that can go wrong.”
Please read the full essay: http://lithub.com/i-used-to-be-a-writer-then-i-got-sick/
I’m going to attempt to share my YouCaring.com update here…
If everyone who visited this post donated a dollar, I would be able to pay my overdue and upcoming medical bills.
I’m so befuddled by this an drowning, I’m starting to get a migraine.