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Dating with a chronic illness: When do I disclose? What if it changes the way they see me? via Washington Post

January 9 at 7:00 AM

My mom lightly shook my shoulders. Groggy, I sat up and looked down at the catheter bag hanging below me. I checked my phone: No notifications. He knew I was recovering, but I hadn’t filled him in on too many details. I texted him earlier to say that, save for a last-minute hiccup, all was going well. I got up, emptied my catheter bag and returned to the couch. His name lit up on my phone.

I read his casual response about his weekend and his work schedule, void of any inquiry into how I was feeling. I put my phone down and planned to respond later, once the oxycodone haze lifted.

Fourteen minutes later, his name popped up on my screen again.

“But hey I’ve been thinking, and I’ve had a ton of fun hanging out but I’m really not in a good place right now to keep going out. I feel super [crappy] saying this after you just had surgery, but I’ve just got so much going on that I really can’t balance. I hope you can understand where I’m coming from and again, I’m really sorry I’m doing this right after surgery.”

I fixated on the line about balance. I looked down at my catheter bag, back at my phone collecting work and law school emails while my account was in “vacation” mode. I tried to fathom asking someone in my position for understanding — complaining to me about balance; the inherent self-centeredness of it and the indifference to what I was balancing at that very moment.

I was angry. But part of me wasn’t surprised.

We went to college together, just over three years prior, and I’d always been attracted to him. One night I sent him a Facebook message asking if he wanted to go out, and he said yes almost immediately.

We weren’t serious, or official, but we were close enough to know each other’s schedules, to talk on the phone and to hold off watching “The Handmaid’s Tale” finale until we could watch it together. I was used to drawing lines in my relationships, stepping in and out of emotional spaces as a calculated means of self-protection — distinguishing sex from intimacy, a good rapport from real compatibility. But our closeness felt earnest.

Four days before he texted me to break things off, I underwent surgery to treat endometriosis — my third in as many years. Endometriosis is like a benign but painful cancer; aberrant tissue grows in places it shouldn’t, causing acute and chronic pain. Few surgeons in the country are skilled enough to treat it effectively, and without proper and early intervention it can cause permanent damage and infertility. This time around, what we anticipated to be a short procedure turned into a four-hour ordeal requiring the reconstruction of my bladder and left ovary. I stayed overnight in the hospital and was sent home with a catheter for 11 long days.

Since my diagnosis, I’ve talked to so many women about the ways illness can complicate relationships. I’ve heard stories of breakups, of cheating, of detachment and callousness. It’s not just anecdotal — research shows that being a woman with a serious illness increases your chances of “partner abandonment,” and that this desertion subsequently affects quality of life. For endometriosis patients, these experiences are colored by the intimate nature of the disease, and the ways in which society designates women’s worth by their sexual performance and reproductive capabilities.

Deciding how to talk to the men I date about being sick has been a tenuous exercise — one I’ve practiced over and over since my endometriosis was diagnosed when I was 22. Sometimes I mention endometriosis by name; other times I just say I’ve been “sick.” Sometimes I mention that I’m undergoing physical therapy, but usually I just say I have a “bad back.”

My experiences have not been all that encouraging. There was the personal trainer who, when I explained the symptoms of endometriosis over drinks — back pain, pelvic pain, fatigue — crudely joked, “I have that all right now,” and asked me point-blank if it made me “weak, sexually.” There was the casual tryst with the schoolteacher whose eyes deflated when he caught sight of my scars while we were being intimate; a moment I fixated on when he didn’t answer my text later that day. Then there are the men who disappear after a date when I happen to mention what I’ve been through, who stop answering my texts after finding me on social media, where I talk openly about endometriosis; men whose departures or behavior cannot be directly or conclusively traced to my being sick, but who leave a lingering ambiguity. I often wonder: Did it scare him away? Did it turn him off?

Lying in bed on our third date, my new partner and I talked about our scars, his from a drunken college antic, mine from surgery. I explained how I had been treated for a disease that is common but painful. I described my symptoms, without ever using the word “endometriosis,” afraid he might Google it and come to his own conclusions about what it meant for me and for us. He listened intently and didn’t pry. He seemed unfazed, but not indifferent.

But I was terrified to bring up the surgery — scared that it would fray the delicate infrastructure of something new. When I finally did broach the subject, I played down the procedure, but I was honest about how nervous I had been to bring it up. I told him that I would look fine afterward, and that it would not have any adverse effect on sex, but that we might need to lie low for a few weeks. He was kind and supportive.

The odd thing is, in virtually every other aspect of my life — with my professors and co-workers, my friends — I’m quite open about my condition. I have even written extensively about endometriosis and the systemic disbelief of female pain. I’m a vocal advocate for better care; nearly everyone in my life who isn’t someone I’m dating knows what I’ve been through.

Despite that, when I do finally disclose what I’ve been through to someone I’m dating, I feel as though I’m losing my ability to define how my partner sees me. It’s like a switch flips — one minute I’m the woman who has sex on the first date, the next I’m brittle — the woman with baggage. Keeping my sickness from my partners has also allowed me to stay in the role I want: to be fun, to feel young and wanted.

I don’t know if that text was really about my surgery. But that doesn’t change how I felt that day — resentful of him, and of this inconvenient reality that bore down on something new and fragile, either causing it to break or making the break seem colder.

Although I’m tempted to invoke optimism — that with the right person I won’t be so afraid to talk about what I’ve been through, or that it won’t make a difference in how that person sees me — that seems hollow and rote. I’ve learned that empathy is not visceral. Sometimes in its place we find crudeness or apathy, misunderstanding or rejection. At the same time, dating while sick has been a crash course in learning to stop sanitizing my realities for the comfort of others. So, although I considered responding to that text with artificial understanding, or even something confrontational, I instead settled on a single GIF: John Oliver saying, curtly, “Cool.”

I was “balancing” too much to come up with anything else.

End of original article.

This article was reposted by VuVatech is a company that created VuVa Magnetic Vaginal Dilators to help women with pelvic pain. Learn more about vaginal dilator therapy at

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