Guest Voice: The story of an EDS warrior’s menstruation woes

When Daralyse Lyons isn’t doing splits or jumping out of airplanes, this former yoga teacher and eternal adrenaline junkie can be found with pen in hand furiously scribbling her latest novel. To date, she’s written more than two dozen books, a handful of short stories, and countless articles. A member of the National Association of Black Journalists, vice president of the Philadelphia chapter of the National Lesbian and Gay Journalists Association, the host of several podcasts, an actor, a storyteller, a soon-to-be newspaper publisher and a summa cum laude graduate of New York University, Daralyse brings intelligence and enthusiasm to all her endeavors. She also lives with Ehlers-Danlos syndrome (EDS).

My therapist recently described my existence as a “maybe life,” which I think sums it up pretty perfectly. Maybe I can do that. Maybe not. Maybe I can go there. Maybe not. Maybe I’ll be functional. Or not.

I’ll let you in on a secret. Even if I’m functioning well, I feel a gripping sense of terror, anticipation, and worry about whether I’ll be able to stand upright, to deliver on my commitment to suit up and show up, and to remain a woman of my word.

For a person with EDS, I’m pretty high-functioning and have lived an amazing life, squeezing a tremendous amount into my 40 years. But I’ve also spent days, weeks, months, years, curled in fetal positions on bathroom floors and in hospitals, writhing in agony.

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There was the time my colon shut down, and I didn’t go to the bathroom (No. 2) for five weeks. And the time I had my appendix out. And the time I had a polypectomy that didn’t take. And the endless consultations and debates about whether to have a hysterectomy. I’ve missed trips, vacations, work engagements, dates, and more.

For those events I haven’t missed, more often than not I’ve done elaborate mental gymnastics calculating the likelihood of my being able to be there and be functional. For me, that mostly means calculating my extremely unpredictable and erratic menstrual cycle. Each red menace can arrive within three to six weeks of the last. It never gives me much warning; it simply strikes, and mercilessly.

I am not alone.

The red menace

According to Ehlers-Danlos News, “adult women with EDS frequently experience gynecological complications, with 72%–93% of them complaining of menstrual cramps, and 33%–76% of them reporting heavy menstrual bleeding.”

So I’m a statistic. In terms of how that plays out in my everyday existence, not well. I know I shouldn’t feel shame about my body not being able to do normal things normally, but I do. I feel shame, sadness, anger, and entitlement with no expectation that anything will be different, because even after menopause I know my EDS body will continue to struggle in unpredictable and unforeseeable ways.

In terms of life right now, I’m rendered occasionally unreliable by a body that betrays me. Even when it doesn’t, I’m afraid it will, and I’m holding my breath each month hoping that my incapacitation will arrive at a convenient time, or at least a less inconvenient one.

Daralyse Lyons lives with uncertainty because of her EDS. (Photo by Vernon Ray)

In 2021, I took to the TEDx stage. In the days leading up to my speech, I wasn’t nervous about the contents of my talk, despite its fraught subject matter. (I was speaking about multiracial identity.) I was nervous about getting sidelined by my erratic — and very mean — monthly visitor. Ditto when I went on a once-in-a-lifetime trip to Italy or when I didn’t go to a black-tie event because my body wouldn’t allow me.

I hate being in a menstruating body not because I have any qualms about being a woman but because it makes EDS a monthly terror and makes me a victim to a set of symptoms I can’t control or ameliorate. I’ve tried the pill (it didn’t work). I’ve consulted surgeons who’ve warned me that their interventions might lead to other organ migrations. The devil you know, and all that jazz.

This condition is bearable, barely. Something else might be worse and happen more often. So I’ve opted to suffer. Not that that makes it easier.

For me, having Ehlers-Danlos comes with a barrage of annoying, upsetting, and occasionally cool side effects. Yes, my body emits unpredictable noises; yes, my gastrointestinal system may not function on any given day; yes, I can do party tricks.

But I also often feel out of control and unable to trust that I’ll be able to do what I want when I want to do it. Since my EDS isn’t always incapacitating, feel free to invite me to your next event or party. That said, don’t take it personally when you get my RSVP. Not yes. Not no. I’ll almost always be a maybe.

To submit your own Guest Voice for publication on Ehlers-Danlos News, please email your idea to our director of community content at [email protected] with the following in the subject line: “Guest Voice: Ehlers-Danlos News.”

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.