Tuesday, August 16, 2016

Where Are You?

When I post images to my Facebook page, I usually get responses, especially images which reflect the love I have for my family - old wedding photos, my husband and daughter together, "back in the day" shots, etc. Sharing the art I create which helps me go on from moment to moment, seems to strike a chord with my friends. And since I spend about 95% of my daily life housebound, Facebook is my connection to the outside world. It is gratifying to have these responses, because it means someone is listening to what I have to say. And after 8 years of spending most of my life lying on my back on my bed, I still feel I have friends.

But I have noticed that when what I have to say is not about pretty images, or about a funny experience I had with the animals we live with, or the bird nests popping up in spring, things change. If instead I am communicating about the painful side of living like a hermit, of loss and grief, or as I did yesterday, the bitter realization that you and a few million other people are of no consequence to the medical community, the feedback and responses go silent. There's an uncomfortable tenseness in the air of my Facebook world and I get the sense that people are waiting for me to get myself back on track. Their track.

It's as if they are thinking:

"Well, she's off on one of her "feel sorry for myself" trips. I don't have anything to say and I will respond to her when she says something more uplifting, or funny or "normal". A little judgement is going on there.

"Eww, I never know how to answer someone when they talk about pain. I'll wait till she comes back to normal" Gee, how hard is it to say "I'm sorry, I know that's frustrating"?

"Doesn't she know that it's more admirable to not complain, to be an encouragement to others, to show how strong her faith is by never being down?" Well, that's just baloney.

My life is narrow, in the physical sense. And like anyone else, I would like to hear some compassion, sympathy and empathy when I need it. I try to do it for others - my many friends who are stuck in this  medical twilight world of living vicariously through others feel the same frustration when people turn away, or pretend to not hear or see your need, and wait until they are comfortable when once again we have stepped back into the role of not upsetting their view of us. They ignore us until we act the way they want. It's less trouble that way. For them.

Well, it's painful for me. I hate being invisible, living in a visible world with an invisible illness. How hard is it to simply acknowledge that sometimes I feel pain, grief, anger, loneliness, etc. and when I post, it is my only outlet to ask for a cyber hug or a pat on the back, or encouragement of some kind? Is it that hard for you to take the time to extend to me and others like me the human touch, even if it is only through cyber space?

Does it make you feel uncomfortable? Why?

Yesterday, news that the National Institutes of Health (NIH) awarded research grant up to $63 million to study heredity and health in AFRICA  came as a blow to the millions of us who are mainly invisible to the medical community here in the UNITED STATES. There has been more money given to study male pattern baldness then to help fund research for the community who have had their lives shut down by an illness which no one understands the cause, or has an solid plan for recovery. We live under a death sentence, as sufferers of Myalgic Encephalomyelitis we are highly more likely to have heart conditions, cancer or strokes because of the effects on our heart, organs and brain.  

It is not taught in medical school. Doctors are not trained to hear us and believe us. The ones who do are just a handful and they are coming to an age where they will be retiring. There are not a lot of new medical personnel on the horizon to take their places.

Yes, that makes me angry. The NIH director is appointed by the sitting president, so whoever wins this fall will be making some changes in the agency. We have fought for 30 years for recognition, and if nothing is in place for intense research, we will lose the uphill battle and have to start yet again.

And wouldn't that make you angry? From your bed as you lie there? Would you like to be ignored?

And that is why it hurts when there is little to no response when I post my frustrations on Facebook. Hey friends, where are you now? (And to certain ones who make an effort, please don't automatically blame yourself. I am grateful for you.)

It doesn't cost you that much to say you care.

So say it.

Live your life one day at a time!


  1. Love you mom! You've done a great job writing all of this out and explaining it clearly. Wish I could make things better. Sending a cyber hug! And of course a real one will happen soon! :)

  2. Hey, friend. I responded to this yesterday, but I must not have submitted it correctly...I want you to know that I hear you and what you say matters. You're right. It is difficult for us to acknowledge and confront what is hard to understand or uncomfortable. I spend a ridiculous amount of time trying to make myself and others comfortable and and often end up doing a disservice to everyone. You speak your truth, lady. The good, bad and ugly.🗣


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