A Touchy Subject: Intimacy

Here’s a touchy subject: intimacy. Intimacy as a person with one or more chronic diseases/conditions/illnesses is a challenge, at least it’s been for me. It requires hefty doses of humility and humor, both of which chronic pain can deplete even in the most positive person.

I have fibromyalgia and celiac disease, which means fits and flares of debilitating symptoms that contribute to a rolling landscape of pain. With celiac disease, the pain comes from being accidentally glutened. There’s the crampy pain, the inflammation pain, and the stabbing pain inside the intestinal tract that can frog-hop for several days. The accompanying GI disturbances–first, there’s no movement and then a few days later, there’s way too much movement in said intestines–are anything but sexy. I also get the DH rash and not just on my arms and legs. It pops up on the orbs with which I might moon someone if I was inclined toward such behavior. That rash creates an itch that must be scratched: not the kind of self-touch that excites one’s date, let’s just say.

The good news with celiac disease is the pain only comes with gluten. As long as I’m extremely careful about what goes into my mouth (go ahead and giggle), I have no problems. Of course, if you have celiac disease or gluten intolerance, then you know how difficult it can be to stay 100% gluten free. I once got sick after eating some Mike & Ike candy, which are gluten free and say so on the package, because the person who stuck his hand in the bag and grabbed some before me also was eating a very glutinous sandwich. Those bread crumbs stuck to her hands and then sloughed off on the next surface the hands touched: the candy. It was my own fault. Never eat something if a non-Gfree person touches it first.

Fibromyalgia is a bit more tricky. The disease is characterized by widespread pain lasting more than three months. Back when I was diagnosed in 1988, diagnosis required eleven of eighteen “trigger points” to test positive for pain when pressed. According to the Mayo Clinic, the new diagnostic guidelines don’t require the tender point test; instead, the pain can’t be explained by any underlying medical condition in order to call it fibromyalgia. I won’t argue about the diagnostic guidelines here.  What I will say is the pain of fibromyalgia is real, is widespread, and interferes mightily with daily life when one is in a flare. The good news is flares are minimal with the proper balance of exercise, rest, nutrition and medication. Problems arise when the balance gets unbalanced: when I get sick with a cold or I work too hard and don’t get enough sleep or slack on my physical exercise routine, the fibro flame flares and it can take a few weeks to snuff it.

A heavy sweater, while warm, can feel like a torture device during a fibro flare and skinny jeans feel like compression tubing when gluten attacks the gut. When a severe gluten attack triggers a fibro flare, it’s a four-swear firestorm. That stupid gluten rash, the dermatitis herpetiformis, makes me scratch so hard I bleed, while the fibro pain in the soft tissue beneath the itchy skin screams against the pressure of the scratching. The loose fabric clothes that accommodate the abdominal inflammation brush across the rash, inciting more itching. It’s a vicious circle.

It takes humility to ask for help when small packages seemingly morph into kettleball weights. When this first happened years ago, I’d power through it, afraid people would think me weak or whiny if I asked for help carrying the grocery bags to and from the car. “No, it’s fine. I’ve got it!” I’d say through gritted teeth, while inside I was screaming, “Help! Help! This bag of soymilk and tuna is digging canyons into my hands!”

I once stubbornly dragged a suitcase down two flights of stairs at the rapid transit station rather than ask for help. My reward? Pulling a muscle in my shoulder that took months to heal plus a tear in my suitcase. Years later, a board-certified orthopaedic specialist explained to me that fibromyalgia increases my risk of soft tissue injuries: torn muscles, ligaments, and tendons all are common in people with fibromyalgia. News to me, but it explained why I’ve had three surgeries for severe soft tissue damage in less than ten years. Check out this interesting article about the subject on HealingWell.com.

It also takes humility–and courage–to sidestep a hug from loving friends and family when a flare has my skin feeling like an angry union picket line. It’s awful when a loving caress feels like being buffed with rough sandpaper. It’s worse when a prolonged flare turns an intimate relationship into a dodge ball tournament. It’s essential to speak up and clearly explain that the need for physical distance has everything to do with a horrible chronic condition and nothing to do with a sudden change of heart. Just avoiding it, or coming up with clever excuses like, “I’m too tired,” won’t work. I know from experience. Either the other person feels resentful and pulls away, or worse, decides to push on with the intimacy.

Submitting to painful intimacy, suffering in silence, is a bad idea. I know this, too, from experience. The lingering pain turns into lingering resentment and lingering resentment damages the heart. It’s painfully difficult, I know, to turn down your sweetie, especially when he’s feeling neglected and frisky. He’s not wrong for wanting intimate touch and you’re not wrong for not wanting intimate touch. The mismatch feels wrong and may, indeed, be wrong in the way that having only chocolate cake available on your birthday when you’re allergic to chocolate is wrong, but it can be dealt with, can be managed by making vanilla your new flavor fave. It isn’t someone’s fault, doesn’t make someone bad, doesn’t doom someone. Of course, I say that, but inside I feel at fault. I feel bad. I feel doomed.

I struggle with the right to set limits when I’m in a flare. It makes me want to avoid relationships, avoid intimacy, avoid, avoid, avoid. Enough avoiding and suddenly, one day, I won’t have to avoid because there will be a void: the love, the lover, the intimacy will be gone. So, what to do? The answer, of course, is honest communication, but that’s not what I want to do. I want a quick and painless solution. I don’t want to be broken at intimacy, too, the way I feel broken because I have to follow a strict GF diet, maintain a strictly GF household, get enough exercise and sleep and take the right medicine to minimize the fibro flares, ask for help when carrying things hurts, not ingest alcohol, stay indoors and take lots of allergy meds during spring, and blah blah blah blah blah.

Of course, real love understands and accepts the medically required “no” and real love lovingly searches for understanding, acceptance, and mutually beneficial solutions. Selfishness turns it into, “Well, if you really loved me you’d make love to me even though it hurts. I have needs, too.” Self-pity responds, “Well, if you really loved me intimacy wouldn’t be an issue. It’s overrated and unnecessary. Love me for my mind, and leave my body alone.”

Both sides of that kind of argument are unhealthy and dangerous. Love understands the need for a spatial relationship and seeks ways to create and recreate that space which narrows and widens depending on conditions. Love isn’t limited by what’s physically possible or impossible.

Love makes it possible to creatively problem solve, like asking your sweetie to give you a very, very gentle rub with healing oils (Lush makes a great gluten free massage bar specifically for treating painful muscles: Wiccy Magic Muscle) when such a massage will help more than hurt. Show him how to do it by giving him a massage first, using the light touch that helps, not hurts, you. Play games to maintain emotional and mental intimacy when physical intimacy isn’t medically advised. Focus on helping each other, not just on the “sick one.” Do other things that bring you together.

And then when the time is right, jump in bed and go for it…after he brushes his teeth and washes his face and hands and body with gluten free products, of course. The last thing you want is to get glutened from kisses! I’ve done that one, too. It’s not worth it, but that’s another story for another post.