Wednesday, March 2, 2016

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.