By: Jana Greene
I am a girl’s girl. In that I mean, I love my girlfriends as if they were flesh and blood sisters. They are phenomenal, strong, light-bearing women.
My tribe.
My pack.
But within the sphere of God-given friends is a sub-group of friends. They are a demographic who was neither invited to – nor invited me – to the fold. We are all here by happenstance, unless you believe in kismet, which I do.
Wikipedia explains “kismet” thus: “…When you encounter something by chance that seems like it was meant to be, then it could be kismet, your destiny. You can think of kismet as your lot in life, or your fate.”
We didn’t ask to be joined together in solidarity for things we didn’t ask to experience. We are chronic illness and pain sufferers.
I myself have the “trifecta” of Ehlers-Danlos Syndrome (EDS), Postural orthostatic tachycardia syndrome (POTs), and Mast Cell Activation Syndrome. I also have a smattering of genetic anomalies and defects that effect my day-to-day health and immune function (or lack thereof) but those are The Big Three. It really doesn’t matter what condition you have; if it’s chronic, congratulations – you’re a member of the last club you ever wanted to be a member of. Oh boy.
Some of my chronically ill friends I met through church, the mommy circuit, and Facebook. Others have appeared in my life through more serendipitous means. “It’s a wonder,” I often tell myself. “Its a wonder I had the good luck to meet so many women from across the globe facing pain and sickness every day.” And when I remind myself of all the broken roads that had to bring me to this juncture, I am thankful that these friends were willing to be vulnerable so that we CAN all share our journeys. Because transparency is hard, ya’ll. But isolating is far more damaging.
We tell people that we are “feeling better,” because when they ask if we are, it only seems polite to say yes. The good old standby, “FINE” is also a time-dishonored thing to say.
We HATE to be felt sorry for, but we would like to be understood. We are trying our level best to cope with the “new normal” that is our life now and forevermore.
We post funny illness-related memes to social media because gallows humor sees us through. Things that really shouldn’t ever be funny sometimes MUST be.
We secretly hope that one day – despite our gene mutations and immune deficiencies and janky neurological whatnot – we will wake up and feel GREAT. Or just NORMAL.
We fantasize about doing normal things without dislocating joints or pulling tendons. Or hell, just walking to the bathroom and back without limping and popping.
It can be a lonely feeling when the rest of the world is getting on. People go about their business (as they should, and as I used to do myself) and your sickly ass is in bed. Sounds relaxing. It’s not. It’s frustrating.
It’s easy to feel alone if your body wakes up determined to kick your ass every day. And the thing about having a chronic illness is that, um….it’s CHRONIC, man. People very naturally get tired of hearing our complaints.
The world at large says, “Enough with the illness awareness, already. We are AWARE.” Except that awareness isn’t fixing my soul, the fresh scars that physical pain and fatigue leave every day. It’s very difficult to go to bed after a day of fighting pain and knowing full well you will be in pain the minute you wake in the morning.
Know what does help fix me, though? Through kismet – fate itself and the God who authors it and arranges these friendships – I am restored every day. Even if ONLY for one day. Just as in my recovery from alcoholism, I try to take it only one day at a time.
And this tribe of fellow sufferers?
WE’VE GOT EACH OTHER.
Long after the rest of the world is tired of hearing about our symptoms.
Long after the rest of the world has us pegged as complainers.
We remind each other that we are not the sum total of our ailments.
We remind each other that OF COURSE we are strong and fierce – look at the demon slaying we do on the daily!
We say “I love you” every chance we get, because it’s the God’s honest truth.
We encourage one another not to forget that our bodies are vessels for our souls, and they are not the boss of us. (Most days.) Spirit trumps flesh, every time.
We tell each other that “this too shall pass,” even knowing all the while something else is queuing up behind it. We will cross that bridge (together) when we come to it.
When God brings others who are suffering similarly into our lives, it’s like he is saying, “Here, I’m going to go through this with you. I’m going to hug you through this person. I’m going to speak encouragement to you through this person.”
And on this painful, exhausting, rainy Monday, I’m just one girl who fights chronic illness. But I’m not JUST one girl. I’ve got a whole tribe of friends and we get each other through. Over coffee or over text messages. On support boards online and private messaging.
Nobody said that in order to bear light to this world, we have to bear weight on that sore hip. Our cells may not hold up spectacularly, but we can still hold one another up with our camaraderie. Our genetics don’t have to be stellar for us to love REALLY big.
Chronic illness might be our “lot in life,” but I’m so grateful that we don’t have to go it alone.
Being strong women who lend our strength to other strong women? That’s kismet at it’s finest, baby. That lends meaning to our struggle. That support is so sweet, that it almost makes the pain bearable. One day at a time.