September - October
Living With CFIDS
By Lily Gregory
My love life is on the rocks. Life with Mr. Wonderful is proving not to be
This is the point in a personís 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 Ďtil dusk in my cubicle. Then Iíd 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...Iíll release, all right. Right upside his head. Scorned girlfriend-induced brain fog would serve
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 wouldnít be in this situation, anyway). It wasnít
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 babyís leaving for college"
event 10 years prior. Illness makes the mom grow fonder, I guess.
Anyway, it was at about the
"Iím not dying anymore, but Iím 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 letís 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 canít
go to bars or eat out at restaurants seeks spiritually aware male with decent health insurance."
considered resorting to dramatic measures, but although my Chinese herbal remedies had definite curative
powers, there wasnít 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 itís whatís 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 thereís one thing people with CFIDS
donít need, itís 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 wasnít looking for a husband, just enjoying things
moment by moment. If my soulmate appeared, heíd have to accept me and my immune system "as is."
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 Iíd learned along my path to healing.
Although I managed to remain remarkably balanced most of the time, unfortunately I forgot one thing. The
Even though my boyfriend seemed to accept my health history and support my healing, I still
didnít 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, heíd run. So I was determined that he wouldnít find out, and I held a lot of myself
The relationship finally did fizzle, but ironically it wasnít 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, Iím the typical woman scorned. Except that along with an aching heart, I have an aching
back, aching legs and aching kidneys.
But Iím used to living with pain, and I wouldnít have traded
this experience for anything. Even if this guy didnít turn out to be the man Iíd hoped he was, he did
remind me there is still hope. Iíll probably see him one last time. I guess I should give him a hug and
thank him for all heís given me. Then, Iíll give him a good kick where it counts. He said he liked strong
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.