The Brave Love of the Woman Who Chose Me, Disease and All

I have Ehlers-Danlos syndrome. I also have in my life a woman who loves me — all of my pieces, together and apart (and they are so often apart). Who loves me when my joints slip in and out of place like the breath-holding, heart-pounding moment when cupped hands become laced fingers. Who loves me when I am in too much pain to leave the house, and when I am too tired to keep our date night, and when I am too fuzzy-brained from the meds to remember we had a date night.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

She tells me I groan in my sleep when I move. I tell her it’s because in my sleep, I can’t control my body’s guttural response to movement. In my sleep, I can’t swallow pain like the handful of pills that keeps my head above water. In my sleep, I am as honest as I will ever be about the way those snap-crackle-pop joints moan under the weight of just living. She gives me that look of hers, full of quiet resolve, and then kisses me gently, and it is the most sincere response anyone has ever given when confronted with the reality of my disease.

When an ankle rolls and I lose my footing, she never fails to catch my arm — just in time, every time. It’s like her reflexes were made for this — to love a woman whose own reflexes only ever hurt, who holds her breath when the doctor’s mallet lands on her knee because the dull rubber thud reverberates through her lax, pain-stricken joints like a jackhammer.

I keep my face as still as a frozen pond, as unflinching. They never believe me when I tell them how much pain a simple exam causes; the fire over my skin, the howl that runs deep through muscle and echoes long after they walk away. How could this hurt? I barely touched you. Are you sure? Are you sure? They would ask a hanged man if his neck really hurt, or if he might be over-reacting a little. So, fine. Do your worst. Consider me ice.

(I have always worn my best poker face with no cards in my hand anyway.)

But she makes me feel like I got dealt a good hand. Like even with EDS, when the chips are down, it’s a pair of queens and we win. We beat everything and nothing hurts anymore. For just a second, she looks at me like she can will the pain away, and in that second, she can. She does.

She thinks I am brave for living a full life, despite my myriad health problems and their consequences. I think she is brave for staying with me when she could choose to walk away from all of it. I was born with these issues; she wasn’t. Sometimes I am afraid she might decide that enough is enough; every day I am thrilled that she doesn’t. Despite all the pills, the doctor’s appointments, the PT, the scans and studies and blood draws… she doesn’t.

Across my shoulder is a tattoo that reads, love is patient, love is kind. In these moments — when I see my reflection in the ice instead of becoming it, when she kisses what hurts, unable to feel it for me but always facing it with me — I think my shoulder needs an addendum: love is brave.

Those of us who are chronically ill, we need brave love. We must love ourselves bravely, and be loved bravely by a partner who is able to stand with us and face our disease(s) courageously. Because honestly? It takes guts to love someone who is sometimes overwhelmed by pain, who cancels plans because the hurt — physical, emotional, psychological — is too powerful that day; whose life at least partially revolves around doctor’s visits, medication regimens, and therapies of many kinds. It takes guts to stay.

She never mentions it — it’s not in her nature — but I know she makes sacrifices that sometimes she probably wishes she did not have to, in order to accommodate my illness. And I don’t forget that for a second. Every day I look at her and thank my personal deity that this quiet, strong, gutsy woman chose me, and continues to choose me every day, on the good and bad days. She chooses me anyway, disease and all.

Because to her, I am not broken. I am complete. I am lovable. I am worthy, disease and all.

There is a quote attributed to Lao Tzu that says, “Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” I see that every day in the love and devotion she shows me, and that I give to her. Being loved so deeply and bravely by her gives me the courage to face life, disease and all, on the days when I might not have it in me otherwise. And loving her with such profound depth gives me the strength to get up out of bed and do something that day, because I want to be out in the world with her, not stuck in bed watching the world pass us by. Even though that would be easier, and probably less painful, and definitely less exhausting for us to just stay home. I want to live, not just exist, and I want to do it as much for her as for myself.

Love is patient, love is kind… love is brave.