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Ask Ada: ‘When Should I Tell A Date I’m Disabled?’

In our new advice column, Ada explains the best way to reveal an invisible disability when dating, and helps a husband understand his wife's decision to undergo a life-changing surgical procedure.

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

How Do I Tell My Date About My Invisible Disability?

“Dear Ada—Reentering the dating world with an invisible disability is difficult. I’ve had mixed results: scaring people off by revealing it too early on or “being manipulative” by not disclosing it for what they perceived as a long time (~2 months, casually seeing each other). Any advice on navigating this situation?” – Sincerely, Brooke

Dating is one decision after another: What should you wear? Where should you go? How long should you wait to follow up for a second date? An invisible disability forces an additional question on you: When should you mention your diagnosis?

I wish I could tell you that there was a formula: for example, if you’re set up with your date through a friend, disclose your disability on the second date, but if you meet online, wait until at least the fifth. But unfortunately, there’s not, just like there’s no clear formula in most dating dilemmas.

I can, however, tell you that you’re wasting your time by keeping the information to yourself. This isn’t to say you should introduce yourself by saying something like: “Hi, I’m Emily and I suffer from Endometriosis!” But bringing up the topic early helps you weed the good dates from the bad ones.

Disclosing your disability shouldn’t feel like a confession. There’s nothing you need to be ashamed of.

I’d recommend disclosing your disability as soon as you’re sure that you’d like to continue getting to know the person you’re out with. You’re not determining if you want to marry them, just whether they’re worth the disclosure.

That answers the ‘when’ but what about the ‘how’? How should you reveal an invisible disability to your date?

Well, the truth is that disability shouldn’t be some shameful secret. It’s a regular part of your life, and that means the best way to disclose it is for it to come up naturally. So if, for example, you have Crohn’s disease, a good time to disclose that would be after you described your food allergies to the server. You could then follow-up by mentioning to your date how much you’ve learned about food since your diagnosis, then let them ask questions, guiding the conversation along when need be.

The bottom line is that disclosing your disability shouldn’t feel like a confession. There’s nothing you need to be ashamed of. Presenting your truth early and earnestly allows your date to process the news with understanding and compassion. If they don’t, then kick ‘em to the curb and try again.

My Wife Wants To Undergo A Double Mastectomy. Help!

Dear Ada—Recently, my wife of three years discovered that she had the BRCAI mutation, which makes it statistically much more likely that she will get breast cancer. Her mother and grandmother died of breast cancer, so my wife wants to get a preventive double mastectomy. But I’m not so sure. I’ve tried to talk to my wife about it, but she’s adamant there’s nothing to talk about: even though she doesn’t have cancer yet, she’s made up her mind, and it doesn’t matter what I say.

Suffice to say, I’m struggling to accept her decision. It’s not that I’ll love her any less without breasts, and obviously, I don’t want to lose her to cancer. I also know that it’s her body, and ultimately, that makes it her decision. But choosing to go through such an extreme surgical procedure without really asking me how I feel about it hurts, and makes me concerned about our future. What other extreme measures might she choose without talking to me first?

What should I do? What is the right way for us to approach this?” – Sincerely, Sam

It seems as if your issue is less about the double mastectomy and more about the fact that your wife made this major decision on her own and isn’t listening to your concerns. It also sounds like you think she came to this conclusion too suddenly.

But I think the truth is that your wife has probably been weighing this decision for years. When your wife’s grandmother and mother died of breast cancer, she probably began researching her options, including mastectomy. When it was confirmed that he was a carrier of the BRCA1 mutation, your wife’s decision became clear. It isn’t that she’s taking this decision lightly, it’s that she’s had a lot more time to come to terms with the emotional and physical transformation that will follow removing her breasts.

This isn’t about your wife’s breasts: it’s about navigating a difficult time together while fully supporting the other person.

Meanwhile, you’re only processing all of this for the first time. You don’t have the intimate knowledge she’s gained about breast cancer over the years, and because of that, you’re having a hard time grasping her train of thought. It’s not that she is trying to shut you out of the decision-making process, it’s that you are both literally at different stages of processing the news, without realizing where the other person is at.

While your wife is ultimately the only person who can make a decision about her own body, you both still need to try to come to a common understanding as to why she’s making this choice. So ask her to educate you, and explain how how she came to her decision. Tell her you love her, and accept her decision, but be honest about feeling left out, and concerned about what a failure to communicate productively about major life-decisions might mean in the future.

And then, once she explains? Respect her decision, and support her however you can. Because like you said, this isn’t about your wife’s breasts: it’s about navigating a difficult time together while fully supporting the other person.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Essays

To Tattoo Or Not Tattoo? After Breast Cancer, That’s The Question

After a mastectomy, I felt mangled and ashamed by what I had lost. For me, micropigmentation was the answer.

Being naked isn’t as much fun after breast cancer. Or at least it wasn’t for me.

The mastectomy, radiation, and chemo port scars that are normally covered by your clothes are revealed, and they can be a painful reminder of not only what your body has gone through, but the sexiness you lost along with your breasts. What’s important to remember is that there are things you can do to feel good about your body again. Just sometimes, it takes doing something that sounds weird at first.

Choosing Double Mastectomy

When I was diagnosed with an aggressive form of breast cancer at age 39, I learned I was a carrier for the BRCA1 mutation which makes women four times more likely to be afflicted with breast cancer. In total, in treating my cancer, I had 22 rounds of chemo, 7 surgeries, 11 infections, and 69 blood tests. So I decided to have both breasts—not just the one with the tumor–removed as a preventative measure, so I’d never have to be poked and prodded this way again.

I’ve always had large breasts, so the question of whether or not I should undergo breast reconstruction after chemo was one I considered carefully.

I’ve always had large breasts, so the question of whether or not I should undergo breast reconstruction after chemo was one I considered carefully. It made me ask myself: “Do I need breasts? Why?” I briefly considered going totally flat-chested, because a style icon of mine–the parent of a close, dear friend–appears to have no boobs, because she is so tall and thin. I had the tall thing going for me, but it seemed like too much of an overhaul since large breasts have been a part of my curvy-gal identity for so long—it felt like they made me “me”.

A woman with short brown hair in a red shirt.

Author Mary Ladd.

I signed on for a DIEP mastectomy surgery because it would be a two-fer. The procedure would remove my breasts and replace them with fat taken from my stomach, instead of implants. So not only would the tumor in my left breast go away, I’d technically get a tummy tuck. Win-win.

Losing A Piece Of Me

But after the DIEP mastectomy surgery, though my breasts were as big as they ever were, an unfortunate consequence of an infection from my surgery was that I lost my nipple to necrosis. Both breasts were left with angry-looking slashes, and looked damaged to me. And even though I had a loving partner who would tell me I was still beautiful, I didn’t feel beautiful or ready to be naked.

This, I would later learn, is a normal way for women to feel after treatment for breast cancer. One in four women worldwide will get breast cancer, and afterwards, many feel mangled and ashamed. In cases like mine where a nipple has been lost, there are surgical prosthetics—silicon nipples, embedded under the skin—but often, the results of the mastectomy leave the patient with chest skin that is too tight to accommodate another surgery.

One in four women worldwide will get breast cancer, and afterwards, many feel mangled and ashamed.

But in these cases, I learned there’s another option. Post-mastectomy tattoo and micro pigmentation. Micropigmentation is akin to permanent make-up, when pigments are injected just below the dermal skin surface. The needles and ink used in micropigmentation are more specialized than mainstream tattoos, but the process itself is similar.

Finding My Final Mile

Not having a nipple felt humiliating. So months later, it felt like kismet when I was put in touch with Cathi Locati, a trained fine artist who is now a “painter of people” based in the Seattle area. It was exciting to look at her “before” and “after” online patient photos, where I saw relieved smiles. Her company is called Final Mile because getting inked is the final way to restore the chest area for mastectomy patients.

Getting a nipple tattoo to replace a ‘real’ one doesn’t sound like it would look convincing, and a lot of time, it isn’t. On her site, Locati has images of amateurish, pepperoni-like tattoos as a comparison to the work she does, and the results aren’t impressive. But Locati’s work looks surprisingly realistic. As I considered hiring her, I also learned that nipple and areola tattoos are covered by insurance via the Women’s Health and Cancer Rights Act of 1998, so I would be reimbursed for most of the expense.

“I know firsthand that scars on the bodies of women after mastectomy can be damaging to the soul,” she said.

So  ready at last to “bring the sexy back!”, I sent Locati three cell phone pictures of me topless.

Getting Inked

Over two sessions that are roughly two hours each, Locati blended and buzzed the skin on both breasts, bringing my missing areola and nipple back to life. While she worked, Locati played soft jazz music, and I lay on my back in a comfy animal print robe. As rain drizzled outside, I felt relaxed. I could feel myself transforming and healing as she used a needle to fix the discolored yellow skin where my nipple had once been.

During our session, she told me why she does this work. Earlier in her life, she, too, had survived breast cancer, leaving her with a breast reduction and scars that made her feel like a walking Frankenstein. “I know firsthand that scars on the bodies of women after mastectomy can be damaging to the soul,” she said. “What I love about my work is that I can see the sexiness and self-confidence return to my customers, minute by minute, as I work.”

And you know what? She was right. As she blended pigment on a palate, letting me pick which shades I liked best, I forgot for the first time since my diagnosis the sickness that once rocked my world.

You can feel whole again after breast cancer. You just need to explore your options.

As for the results? I’m really happy with them. Locati’s work tricks the eye . I still don’t have an actual nipple but from every angle, it looks like I do. Whoa. Since my left breast is about a half size fuller and rounder than the right one, she also did some contouring so that it’s hard to tell my breasts are mismatched anymore. She used pigmentation on both sides, so that the breast now look more like a matched set in key areas: the areola and nipples are aligned and seem to be the same size. Another whoa.

Conclusion

Today, thanks to Locati, I feel whole again. I no longer cringe in disgust when I’m soaping up in the shower, and I once again feel sexy with my partner enough to leave the lights on when we’re intimate. And I’ve come to learn that this “after breast cancer” success story is not one that gets told enough. You can feel whole again after breast cancer. You just need to explore your options, and not be afraid to think outside the box.

Introductory photo of Cathy Locati.