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!

Now Move On

Recently I was taken to task about my disease, being told that I talk too much about it on Facebook. I went through my postings for quite a ways back, and I noticed that most of my disease related posts were about current articles, news or information. I have many Facebook friends who also suffer with Myalgic Encephalomyelitis (M.E.), and other related invisible illnesses and we share articles and information as it comes out across the medical outlets on the internet. Mainly this is because there is no centralized information source, and what research that is being done is scattered and independent from each other, and that research is not well funded.

I did some more thinking and realized I still felt frustrated with the whole episode. After speaking to others about their experiences and reading the blogs of other sufferers, I realized that this response is very common. "Don't talk about your illness anymore. We are tired of hearing about it. We don't need to be reminded. We understand, now move on."

No, you don't.

Just like I don't understand what it's like to have Down Syndrome, because I have not experienced it. (Or any other physical difference that separates a person from the "normal" crowd.)

There are a lot of aphorisms people use about understanding what a person is going through, or experiencing. "Walk a mile in their shoes." "You don't understand unless you have experienced it yourself." and other similar sentences. Actually, they are very accurate, and for those of us in the (mostly) sisterhood of these invisible illnesses, we can identify closely with one another, and that gives us great comfort.

I know someone who has a severe disability because of a fall experienced at work. Her days are spent in constant pain, and I can identify somewhat, because the pain I have is not the same. I can still have compassion for her.

There is a great blog about empathy and how to develop it, if you really care enough to do that. A good quote :

"Surprisingly, the ability to empathize with others is relative to a person’s capacity to identify, feel and understand their own feelings and thereby being able to project one’s feelings onto others. This means in turn that it becomes complicated at times to understand what a person is undergoing, if you haven’t undergone it for yourself – or at least felt similar feelings."

But it takes time, and a real desire to do so. Most people who say they "get" M.E. have read very little about it, and think that basically it means "you get tired a lot". Well, yes, there is a tremendous amount of constant overwhelming fatigue, which feels like you are trying to walk through molasses, but that is way beyond tired.

M.E. also includes:

Clinical Fibromyalgia
Sleep Disorders
Non-Restorative Sleep
Chemical Intolerance
Acquired Immune Deficiency
Cardiovascular Abnormalities
Post Exertional Neuroimmune Exhaustion (definition)
Irritable Bowel Syndrome (IBS)
Dysautonomia or POTS Syndrome (definition)
Cognitive Disfunction and Impairment

and much more!!! Each sufferer has differing degrees of the sub-illnesses.

What I am pointing out here is that A) we are not often believed, even by medical personnel (it's not taught in med school), B) we are not often believed by friends and family and they drift away (they think we love the drama), C) we have lost everything from our earlier life, and D) there is very little compassion.

Another reason that we talk about it is because THERE IS NO ONE ADVOCATING FOR M.E. We have no recognized celebrity who speaks in public service ads on TV. That's part of the issue - when you have this disease, you cannot advocate for yourself - you can't travel, you can't make speeches, you can't spend days involved with some governmental sub-committee asking for research grants, you can't even speak eloquently on the telephone.  When we try, we suffer serious setbacks that may last for months, even years. So, there is the Catch-22. And yet the disease has been around for generations. Now, with the internet, there is an opportunity to press for help.

I do have non-sick friends who let me know that they are thinking about and praying for me. They send notes, say hi on Facebook (my connection to the outside world), interact with me as a friend who cares. I have a supportive husband (many of my M.E. friends don't) and an adult daughter who is very caring. And I am very thankful.

If you have friends or family members who suffer from this or any other invisible illness, take some time to research and learn the basics about what they struggle with; take time to ponder what your life would be like if it were you. Really ponder it, imagining yourself going through each day approaching life through their skin. Then practice compassion, a muscle that gets stronger with use. The problem is that it takes effort to do this, to not forget them, to not get angry or irritated by their inability to live the way they used to. Accept the paradigm shift and then let them know you accept them as they are.

And most importantly, remember that when they express pain, sorrow, grief, sadness.... it's their way of screaming out to the world "I HATE BEING THIS WAY AND HAVING NO RECOURSE TO ANYTHING ELSE!!!  I WANT MY LIFE BACK!!!"

And you should really listen.