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September - October 1999

Living With CFIDS
The dating game, CFIDS-style
By Lily Gregory

My love life is on the rocks. Life with Mr. Wonderful is proving not to be so wonderful. This is the point in a person’s life for which country music was created, the time when "my love done me wrong" songs make sense.

If I were a career woman, like most of my peers, I would bury myself in my work, spending dawn ‘til dusk in my cubicle. Then I’d bury myself in tequila surveying the crowd of potential Mr. Wonderfuls-to-be while my girlfriends consoled me.

Instead, I am a person with chronic fatigue and immune dysfunction syndrome (CFIDS). Thus, I am wandering around my house aimlessly trying not to 1) overthink, 2) overstress or 3) overdo. Action one may induce brain fog. Action two will blow out my adrenals. Action three is sure to bring on a relapse. The ramifications are complex and much more damaging than this one man deserves to cause. Breathe in calm. Breathe out toxins. Release negative energy...I’ll release, all right. Right upside his head. Scorned girlfriend-induced brain fog would serve him right.

This would all be amusing if I looked at it objectively (a perspective which is virtually impossible unless I were the Dalai Lama, in which case I wouldn’t be in this situation, anyway). It wasn’t too long ago that I was bedridden. I relied on my oxygen tank and mother to get me through the day. Luckily, I recovered enough to work part time and lead a cautious but acceptable life.

The oxygen tank was relegated to storage and mom resumed her role as one who needed to let her daughter move out and lead her own life. Again. Somehow, this time seemed more tear-jerking than the "my baby’s leaving for college" event 10 years prior. Illness makes the mom grow fonder, I guess.

Anyway, it was at about the "I’m not dying anymore, but I’m still not healthy" phase that Prince Charming entered the picture. I was still suffering from post-traumatic shock at the fact that I was still alive, and I found it extremely gratifying that I could actually snare a boyfriend. Sure, I knew all along that I was worthwhile and valuable, but let’s face it, rubber tubing up the nostrils was not exactly a turn-on. My laundry list of limitations did not make for a promising personal ad:

"Single, exhausted female with no income who can’t go to bars or eat out at restaurants seeks spiritually aware male with decent health insurance."

I considered resorting to dramatic measures, but although my Chinese herbal remedies had definite curative powers, there wasn’t an aphrodisiac in the bunch. I guess my acupuncturist was more concerned with boosting my immune system than my sex drive.

Fortunately, as my health improved dramatically, so did my eligibility. And my appearance. Whereas before, my bathroom activity was limited to mustering up enough energy to lift a toothbrush,  I now curled my hair and applied makeup to complement my eyes, not cover up my jaundice. Miniskirts replaced pajamas. Funky shoes replaced fuzzy slippers. Of course, my illness had taught me that it’s what’s inside a person that counts, but my insides sure felt better when looking in the mirror these days.

Yep, I was single with CFIDS. And soon I had a date. Dating under any circumstances is stressful, but dating with a chronic illness is a leap of faith. Prepare for explanations, confusion and rejection. And lame jokes like: "Chronic fatigue syndrome? Then it should be easy to get you into bed." There are definite advantages to not talking about CFIDS on the first date. Deception over the long term, however, is exhausting. And if there’s one thing people with CFIDS don’t need, it’s something extra to wear them out. So I decided to be honest and just try not to scare anyone off with the graphic details.

At least the men I dated would receive a general CFIDS education. My purpose would be to teach! To enlighten! To remain a spinster for the rest of my life! Scratch that last one. No depressing reality checks on my quest for a wedding ring. Actually, since it was only my pre-CFIDS self who leapt for the bridal bouquet at weddings, much of the pressure was off. Post-CFIDS, I was just grateful to be out of the house.  I wasn’t looking for a husband, just enjoying things moment by moment. If my soulmate appeared, he’d have to accept me and my immune system "as is."

Well, the soulmate issue remains in question, but I happily inform you there are quite a few people out there who can handle dating someone with health limitations. My reentry into the world of dating included some of them. Then, the aforementioned Mr. Wonderful entered the scene. They say that falling in love raises the endorphin levels, lifts depression and kicks in the immune system. Well, after I met this guy, my energy level skyrocketed. I hiked, flew an airplane and danced at parties. I still adhered to my regimen of yoga, napping and vitamin therapy, vowing not to forget anything I’d learned along my path to healing. Although I managed to remain remarkably balanced most of the time, unfortunately I forgot one thing. The truth.

Even though my boyfriend seemed to accept my health history and support my healing, I still didn’t trust that this could work. He liked and admired strong, independent women. So I pushed myself to prove I could keep up with the rest of the world. I never could really relax. I was scared that if I showed weakness the relationship would be over. And I liked this guy too much. If he knew how much I really needed him, he’d run. So I was determined that he wouldn’t find out, and I held a lot of myself back.

The relationship finally did fizzle, but ironically it wasn’t because of my health. Bad timing, commitment phobia, another woman...the reasons seemed surprisingly mundane for such a life-affirming experience. So as I write this, I’m the typical woman scorned. Except that along with an aching heart, I have an aching back, aching legs and aching kidneys.

But I’m used to living with pain, and I wouldn’t have traded this experience for anything. Even if this guy didn’t turn out to be the man I’d hoped he was, he did remind me there is still hope. I’ll probably see him one last time. I guess I should give him a hug and thank him for all he’s given me. Then, I’ll give him a good kick where it counts. He said he liked strong women.

The author, who is writing under a pen name, is pleased to report that two months after writing this piece, she reunited with a long-lost boyfriend. They were married in May 1999. The newlyweds live in upstate New York, where Ms. Gregory is a writer.