a : continuing or occurring again and again for a long time b. suffering from a chronic disease
a : always present or encountered; especially : constantly vexing, weakening, or troubling
(Courtesy of Merriam-Webster)
Chances are someone you know and love suffers from a chronic invisible illness. Maybe that someone is you. I'm talking specifically about physical illnesses like Lyme Disease and Lupus, Chronic Fatigue Syndrome and Multiple Sclerosis. I'm talking about Epstein-Barr.
I was diagnosed with Epstein-Barr two months ago when I tested positive for the chronic form of it after getting blood work done. Most of us carry the strain of this virus (or so Mayo Clinic tells me online). Most of us are hosts to plenty of viruses and diseases that can seemingly "go off" at any time.
I personally know people who suffer from EBV, Lyme Disease (& co-infections, including neurological disorders), Lupus, major food allergies, chemical sensitivities, MS, and so much more. The symptoms are endless:
Friends who are extremely brain foggy or fatigued. EBV. Lyme.
Friends who suffer painful, long-lasting migraines. EBV.
I knew someone who couldn't walk and needed a wheelchair. Lyme.
I had a dear friend who was told by others that she was crazy and was sent to intensive psychiatric 'care.' Lyme.
A friend once told me that she had such trouble getting out of bed in the morning because her legs wouldn't work. Wouldn't move. It would take upwards of three hours just to get up on her feet. Lyme.
I met a man in my voice acting class two summers ago who used a cane to walk. MS.
The symptoms are varied, some subtle and others more pronounced. Meanwhile the causes seem much more straightforward; so simplistic somehow yet endlessly destructive, perhaps forever debilitating.
Lyme Disease, as we know it, is spread through a tiny vector that burrows its head inside your body. A tick.
Epstein-Barr Virus is spread through "the oral transfer of saliva and genital secretions." (Thanks, Wikipedia.) So. Share a popsicle as a kid, you can get Epstein-Barr. You make out with someone in high school, you can get Epstein Barr (hello, Mono!). You get the idea. Easy to spread.
In January 2017, I started to feel really, really tired. I usually always have felt some kind of overall malaise and fatigue for most of my adult life, but this was constant. It was worse. My body was achy all the time, I felt like I was going to get the flu all the time, but I never did. I would feel flushed and overly warm by early afternoon and take a nap. The nap/resting time would be 1 - 2 hours; long and lingering. I'd sleep for 8-10 hours a night. Then I started to get terrible migraines that lasted for days, seemingly at random. Gluten was the migraine culprit, so that's no longer in my diet. I have looked up and work on integrating lots of anti-inflammatory foods. I'm still mostly vegetarian, but I eat meat now and again. I don't even eat chocolate anymore.
When blood work revealed that I had a chronic form of Epstein-Barr, I felt both dread and also, quite frankly, some relief. Here was actual evidence that all of those times when I inexplicably "didn't feel well" amounted to something viable. Proof. I wasn't making it up. I wasn't crazy. (http://www.mollysfund.org/2013/04/invisible-illness-but-you-look-so-good/#1)
It's funny to me how maximizing my health and wellness outcome has, for the most part, enabled me to release and let go of foods and substances that are now completely toxic to my system; that aren't serving my overall wellness. I'd never guess that I'd eat bison steak (nor learn to cook it) for its nutritional value or let go of eating chocolate. That I would be googling the benefits of bone broth.
Just a couple of weeks ago, I went for a jog. Afterward, I took a nap. The next day, I went for a walk. Afterward, I took a nap. I knew something was wrong, yet again.
So many others are not even able to consider going for a walk, let alone a jog because of their invisible illness that pulls and stretches and bends, that pokes and prods and stifles. I have no idea what it is like to have suffered an illness for a lifetime, nor known the literal crippling effects that some of my friends have felt. I do know a sense of debilitation now, of extraordinary fatigue, and I have ever more compassion for those among us who face critical junctures with their own health, be it physical or mental.
Might we find some compassion for our neighbors, our family, our friends who are "always tired."
Or always _____________. (Fill in the blank)
I remember thinking not so very long ago in regard to a friend: "Maybe she really isn't that sick." I couldn't see her illness dragging her under during a relapse; couldn't see her brain working hard just to make it through another day. Didn't understand what she meant by being sensitive to her laptop or her cell phone. Sometimes I thought her bailing on our plans again and again was an excuse or cop out; I wasn't a worthy enough friend to hang out with her. Sometimes I would think these thoughts. Other times, I could understand. Those times I could be available and present and caring and compassionate in the ways I knew how to be. Because she was suffering and even though I couldn't see it, she could feel it. Everyday. And I loved her and believed her and wanted to help her in the ways that I could.
I can't go back in time and unthink those other thoughts, but I can take different steps moving forward.
And so for you, a prayer, a poem:
May you be well in your journey. In this stage in your life.
May you find the rest and ease you need to be here on this planet at this time.
There is so much good work for all of us to do, for us to be, for us to share with one another.
We are all called upon, now, for the goodness of humanity. To be the light. To shine in this bleak and bitter winter.
But I have faith, in our wellness and in our illness, that we will still achieve the greatness that is Love.
In this, in love, I say thank you. I am glad you are here. As best as I am able: I see you. I see you beyond your wellness or illness, beyond your pain and your joy. I acknowledge your soul fire, your source light and say, again, thank you.
Blessed Be. Peace Be With You.