ehlers danlos syndrome – So She Laughed Anyway

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.

By: Jana Greene

So here’s the backstory: I have chronic pain and illness on a multitude of health fronts. Ehlers Danlos Syndrome results from a genetic anomaly that affects the collagen my body makes and stores. It’s basically like every cell in my body is held together with bubble gum instead of gorilla glue. I have autoimmune issues, which results in pretty much ALWAYS being sick. I pick up every bug and and – in turn – a secondary infection usually follows. But wait! There’s MORE … which I will spare you in this post, on account of it’s a long ass list and the purpose of me writing this is simply to flip the script on how I typically handle living every day with sickness and pain.

Because you see, I am hard on myself. You are probably harder on yourself than YOU should be, too. Over the past 10 years of never-ending health drama, I have come to hate my own body.

I blame it for keeping me from doing things.

I am constantly resentful of it that it HURTS all the time.

I chastise it for holding me back.

This morning, as I write this, I am sick again. I must have picked up some new, exotic virus in Charlotte last week, when we evacuated due to Hurricane Dorian. I envision my crappy immune system seizing upon the opportunity to allow me to catch something exciting and new, instead of just “local crud.” “Hey, look!” It said. “She hasn’t had THIS bug before! Let’s stand down and not do a damn thing while she suffers!”

So, as a result, I have been sick as a dog for five days, and have not left my bed. There were times in my life where the “luxury” of lying in bed and “relaxing” for five days sounded like a DREAM. But I can assure you, it is it’s own special hell. Times like these, I ESPECIALLY hate my own body.

My constant thoughts can be summed up in this one analogy: “I hate driving this clunker.” My body is like an old car that is falling apart on piece at a time, and all the while, I’m supposed to keep up on the Autobahn with everyone else. When I am trying to do normal things, the brakes fail and I dislocate a joint. When I push through pain to go to the grocery store, OOPS, there goes the bumper! As I maneuver my clunker about on the daily, I wonder if people who can lift heavy grocery bags without subluxation really appreciate what they can do.

Chronic illness is fertile ground for depression to sprout and spread like kudzu. Anxiety is a natural by-product of that depression.

This morning – on day five of this particular virus – I got up to use the bathroom and my hip tried it’s level best to slip out of the socket, which is about as much fun as it sounds. I turned my head this morning to talk to my husband, and because my lymph nodes are like golf balls, it hurt like hell. This kind of stuff WEARS on a person. No wonder I hate my own body!

BUT….

So far, hating my own self has not proven effective in dealing with this life. I know in my innermost being that our bodies are just our “earth suits;” they house our spirits and good or bad, they are not the most important component of who we are. What if instead of spending so much time resenting the body that houses my illnesses, I treated it like I would any other sick or injured person’s body?

I would NEVER talk down to another human being the way I do to myself. I would never say things like…

You never do anything right.

Why are you so defective?

Why can’t you just be normal like everyone else?

Why can’t you do the simplest things without pain?

You are a piece of crap. A genetic nightmare.

You will never get better, so why do you even try?

So this morning, I had a jolting thoughts, and they were so poignant, I almost cried….

My body is hella strong to keep on keepin’ on!

My lymph nodes are so swollen. Oh my God, they must be working SO HARD to get me well!

My joints slipped out of place again. Holy shit! They work so hard with the materials they have been given. Amazing!

I’m so exhausted, because my immune system is trying with all it’s might to FIGHT. How strong it is to keep fighting!

I hurt so much, but it’s because my earth suit refuses to GIVE UP!

We all love the idea of affirmations, but we rarely employ them, I think. We hold Oprah and Brene Brown in high esteem because they are not afraid to pep talk themselves and not dwell in suffering. I’m going to try to work on this, because the status quo is not working for me. Resenting my own body – or illnesses, or pain – is simply stoking the fire of depression and anxiety.

So today, I can tell you that I am wicked STRONG.

I am sick, but it is not what defines me.

I’m in pain, but I overcome every single day.

When I need rest, it’s to help this “clunker” get back on the road again.

DAMN, girl! You are a survivor!

I’ll be kinder to myself if YOU will. I think we chronic illness sufferers deserve at least as much grace as we give others.

Let’s make a conscious effort to appreciate how very hard our bodies work to get through what normies do in the course of every day.

Let’s do that cornball thing where we stand in front of the actual mirror and give our bodies an “atta girl!” and a “thank you!” every day.

Our souls can only benefit from it!

Because we are FIGHTERS, through and through.