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Here’s a touchy subject for a person like me with chronic disease: intimacy. It requires hefty doses of humility and humor, both of which the pain of fibromyalgia and celiac disease can deplete.

With celiac disease, the pain comes from getting glutened: accidentally ingesting even a tiny crumb of gluten from wheat, rye, or barley. There’s the crampy pain, the inflammation pain, and the stabbing pain that can frog-hop the length of the intestinal tract for several days. The accompanying gut 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 “gluten rash,” dermatitis herpetiformis, which affects only about 15 to 25 percent of people with celiac disease. It pops up wherever it wants: arms, legs, face, shoulders, even 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 exactly a seductive kind of self-touch.

The good news with celiac disease is the painful and antisocial symptoms only manifest if I ingest gluten. As long as I’m extremely careful about what goes into my mouth, I’m fine. In reality, it’s difficult to stay 100 percent gluten free. I once got sick after eating some gluten-free candy, because the person who stuck his hand in the bag before me also was handling a very glutinous sandwich. Those bread crumbs stuck to his hands and then sloughed onto the candy I grabbed with my pristine paws.

I’ve also learned the hard way that when someone eats glutinous foods, traces of gluten remain in their mouth and on their lips until washed away. It’s awkward to say to your heartthrob as they lean in, “Hey! Before you plant a big one on me, could you brush and floss?” It feels like a knife in the heart of romance; however, suffering sickening kisses certainly won’t fan the flames of desire.

Fibromyalgia adds more challenges. The disease is characterized by widespread pain lasting more than three months. 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 must not be explained by any underlying medical condition in order to call it fibromyalgia. The pain is deep, unremitting, and interferes mightily with daily life when one is in a flare. I try to minimize flares with the proper balance of exercise, rest, nutrition and medication.

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

It takes humility and self-respect 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 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 attempting intimacy.

Submitting to painful intimacy, suffering in silence, is a very bad idea. I know this, too, from experience. The lingering pain turns into lingering resentment, and lingering resentment damages the heart. It’s difficult, I know, to turn down your sweetie without feeling like a jerk, especially when Sweetie’s feeling neglected and frisky. The mismatch feels 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. During these times, it’s important to validate one another and to agree that neither person is wrong or bad for wanting or not wanting. I say that, but inside I often feel at fault and that feels bad.

I sometimes even feel overwhelmed by the struggle to set limits when I’m in a flare. That, in turn, 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? I don’t want to be broken at intimacy, too, the way I feel broken because I have to follow a strict gluten-free diet, maintain a strictly gluten-free household, get enough exercise, and sleep and take the right medicine to minimize the pain, ask for help when carrying things hurts, not ingest alcohol, stay indoors and take lots of allergy meds during spring, and blah, blah, blah.

The answer is honest communication. Real love understands and accepts the medically required “no,” and real love lovingly searches for understanding, acceptance, and mutually beneficial solutions. Selfishness accuses, “Well, if you really loved me you’d make love even though it hurts. I have needs, too.” Self-pity responds, “Well, if you really loved me you wouldn’t push me for sex at all. Love me for my mind and leave my body alone.” Both are unhealthy and dangerous. I’ve found that love isn’t limited by what’s physically impossible; rather, it can deepen and widen when the couple together seeks ways to stay connected and express their love and desire in more ways than horizontally.

I’ve learned that love feeds creative problem solving. I can ask my sweetie to give me a very, very gentle rub with healing oils – when such a massage will help more than hurt. I show Sweetie how to do it by giving a massage first, demonstrating the kind of light touch that feels good to me. When physical intimacy isn’t medically wise, we play games to maintain emotional and mental intimacy. We also avoid making my illnesses the main event. When I feel unwell, I give myself a boost by doing something loving: put a love note in Sweetie’s lunch bag or make Sweetie’s favorite cake. Giving feels so much better than griping.

And then, when the time is right, I can jump in and go for it…after Sweetie brushes those teeth and washes that face and body with gluten-free products, of course.

[Photo credit to Sean McGrath]

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