Eight years ago, video producer Kate Milliken was 35, single, and living in Manhattan—“a deadly combination,” she jokes. On the day she was anticipating a third date with a guy she was really beginning to like, she noticed that the fatigue and tingling in her hands that had been nagging her for a week had spiraled into something much worse. “There was a whole delay on my left side,” she recalls. “As my brain was telling my feet to walk left, right, left, right, the left side was behind. By the time I got to the doctor, I couldn't keep my balance.”
A neurologist immediately ordered a magnetic resonance imaging (MRI) scan, which revealed a spinal cord lesion in her neck. “Because of where it is, you could have serious mobility problems,” he told her. “Don't even pack. You need to be in the hospital right now.”
From her hospital bed, where she was receiving high doses of intravenous steroids to calm the inflammation in her spinal cord, Milliken wrote an email to the guy she'd been dating. “The third date had enormous potential to go somewhere, and I'd really been looking forward to that,” she says. “I decided to be honest. I told him, ‘Hey, I'm in the hospital and you'll never believe this, but I just got diagnosed with multiple sclerosis [MS]. It'll take me a little bit to recover, but I'm looking forward to going out again.’”
The guy quickly emailed back—“Oh, I'm sorry to hear that!”—and she never heard from him again.
Dating is a minefield for everyone and horror stories abound, from tales of meeting wackos and weirdos to never hearing back from someone you really liked. But when you have a neurologic condition—especially one that could be progressive—it gets even more “complicated,” to borrow a term from Facebook status-speak. Where do you find good dating prospects? When do you reveal your condition—and how much do you reveal—if it's not evident? How do you handle rejection if it's based on your condition, and even if it's not? How do you handle the simple logistics of a date if you aren't able to drive or even take public transportation?
We talked to people who've been there and other experts to find some answers. We can't guarantee that you'll meet your soul mate, but we think these tips will make your dating life easier and more fun.
WAIT UNTIL YOU'RE READY
Lexi Franklin had been with her boyfriend for about two years when she was diagnosed with MS, right around her 21st birthday. “He couldn't handle it. He was like, ‘I love you, but I don't love your MS, and I can't be around it.’”
After they broke up, Franklin didn't date for the next three years. “I wasn't interested in talking to anybody. It was partly because of what happened with him, and also I was trying to figure out, if I do meet somebody, how am I going to tell him I have MS, especially when I don't really know what is to come?”
Franklin's situation is not atypical, says Rosalind Kalb, vice president of the professional resource center at the National MS Society. “Whenever you're diagnosed with a chronic condition and it's new, you have to spend a little time dealing with how you feel about it yourself,” she says. “There's a period of adjustment, grieving, and adaptation. You have a lot of questions about what this means for you in your life, who you are and how you will be perceived by others. It takes some longer than others to put their toes in the water. And that's okay.”
REVEAL EARLY, BUT NOT TOO EARLY
For people with less “visible” neurologic conditions like epilepsy or relapsing-remitting MS, one of the biggest questions is, “When do I tell him or her what I have?” Is the first date too soon? Is the third date too late?
At first, Milliken thought her dating life was over. “I felt like people were looking at me and thinking, ‘Poor Kate. She's single, she's 35, and she has MS. She's done,’” she says. “But after holing up in my room for a few weeks, I decided to confront the situation. Instead of making this my deepest, darkest secret, I was going to put it out there.”
When she'd go out with a new guy, Milliken would usually tell him about her MS on the second date. “It totally reveals people,” she says. “I'd look a dude in the eye on the second date and say, ‘I could be fine for the rest of my life, or I could end up in a wheelchair. It's a crap shoot. Are you willing to take a gamble?’”
Kalb agrees with Milliken's approach. “On the first date you're just trying to find out if this person is worth spending more time with. If you have no visible disability and you're meeting someone for first time, you don't have to say anything at all,” she says. “If you walk with a cane or your gait is changed or you have some other visible symptom, then you can decide whether to explain it. At the very beginning, you have no obligation to be totally up front. Give what you feel comfortable with.”
Jackie Johnson, 36, a blogger for the Muscular Dystrophy Association Transitions Center who has spinal muscular atrophy (SMA), a genetic disorder that causes muscle weakness and wasting, and uses a wheelchair, had one serious relationship in her teens. After that ended—her boyfriend asked her to marry him, but Johnson, who was 18 at the time, thought she was too young—she didn't date for a while.
Once she started again, she was apprehensive about letting prospective suitors know she was in a wheelchair. “I was on Match.com, and I never put up pictures of me in the chair,” she says. “I'd wait until after the first couple of emails and hope that they had gotten to know my personality and intelligence and sense of humor. I kept trying to jump-start dating and wait to discuss my disability, because I really wasn't comfortable talking about it until I was in my early 30s.”
It's tempting to put off revealing a neurologic condition until you've gotten to know someone better. “You may think that waiting until the relationship is more solid means there won't be so much risk,” Kalb says. “But once you've decided this person is worth spending more time with, that's when it's important to start sharing more about yourself. Secrets and half-truths are not a solid foundation for a good relationship. Ask yourself, when would you like to know important information about this person you're seeing? Everybody's got something to share.”
Emily Munson, 30, an attorney in Indianapolis who has SMA, isn't shy about sharing the fact that she's in a wheelchair. On the online dating sites she's tried—Match.com, OkCupid, and eHarmony—she always includes photos of herself that show her in her chair. “It might not be the cover photo, but if you looked through the photos, you'd see that the wheelchair was there,” she says. “OkCupid has a question, ‘What is the first thing someone usually notices about you?’ and that's where I put that I use a wheelchair to get around.”
Although Munson's had several dates, nothing looks promising for a relationship—but she's done just as much rejecting as being rejected.
“I went out once with a guy who was also in a wheelchair, and he had his caregiver and his mom waiting for him in the car. I've fought so hard for my independence, I thought that just wasn't going to work,” she recalls.
LOOK FOR TEACHABLE MOMENTS
Once you've gone out with someone once or twice and you've decided you like him or her enough to be open about your condition, it's time to “put on your teaching hat,” says Kalb.
“Many people don't know anything about multiple sclerosis or other neurologic conditions like epilepsy or SMA. At first, they may be shocked and not want to say the wrong thing, so it's easy to take their silence as rejection and assume they don't want to be with you,” she says. “But sometimes they may just be trying to formulate questions. You have to be prepared to provide information, whether that's answering their questions directly or giving them something to read from the National MS Society or another organization.”
Prepare for their questions by thinking about what you might ask if you were in a similar position. Is the condition progressive, for example? How will your life change in the future? Or, as Johnson heard over and over again from potential matches, “Can you have sex?” She always marveled at that one. “I'd think, ‘Wow, is that all you think about? Don't you have other things you want to ask me about? Because that's not what we're going to do all day long.’”
After her three-year dating hiatus, Franklin met a guy at the community college where she worked. They hit it off immediately and were soon “hanging out” with obvious romantic intent. “This was before I was walking with a cane, before I had a lot more noticeable physical problems. One night we were hanging out at my apartment, and I was getting really bad fatigue. I didn't want to fall asleep and I didn't want to lie to him, so I told him I had MS.”
Franklin's now-boyfriend was mostly unfazed by her revelation. “He just said, ‘Okay, so what does that mean?’ I explained that I had some physical problems that you can see and some that you can't see,” she says. “He was just like, ‘Do you have to go to the hospital? Do you have seizures?’ He was pretty calm about it and just wanted to understand. He made me feel like it wasn't a big deal.”
LEARN TO HANDLE REJECTION
Not everyone is as open as Franklin's boyfriend, and many people may run in the other direction when hearing about a neurologic condition.
“I went with another friend who has spinal muscular atrophy to a couple of speed-dating events where we met about 30 or 40 men, and none of them picked either of us,” says Munson. “I really don't make an effort to ask guys out because I always assume the default answer will be rejection.”
Rejection is always challenging, and no one is an expert at dealing with it, agrees Kalb. “It's sometimes difficult to keep trying, to put yourself out there, knowing that rejection can happen. But if you don't, there's no chance that a relationship can happen.”
Sergio Rodriguez can testify to that. After his MS diagnosis at the age of 25, about seven years ago, he came home from a stint in the hospital to a “Dear John” letter from his then-fiancée, who had already moved out of the apartment they shared.
Heartbroken, Rodriguez threw himself into taking care of his health, going from a sedentary 280 pounds to a fit 195 and getting into “the best shape of my life.” Even so, every girl he dated quickly lost interest after finding out about his condition.
“It threw me for a loop mentally. In seven years, I dated two girls for a total of eight months each, and I was single the rest of that time,” he says. “I went through so many experiences where I felt belittled and almost subhuman.”
But in January 2015, he met a woman through a mutual friend, and they hit it off immediately. “We've been together ever since. I told her right away about the MS. I have nothing to hide, and if somebody is going to judge me based on that, I don't want to be with her,” he says. “She had her questions about how it would affect me, but there was no judging. For the first time in my life I know what it's like to truly be in love and on the same page as my partner. Somebody who's willing to judge you on your diagnosis? That's somebody you don't want to be with.”
THINK AHEAD ABOUT PRACTICAL MATTERS
Dating when you have a neurologic condition can have practical as well as emotional challenges. For many people, transportation is one of the biggest problems. If your mobility is limited, how do you get to your dates?
“It's hard for us sometimes,” says Franklin. “My boyfriend lives a half-hour drive from me, not near public transportation, and I don't drive, so he has to come see me. That means his schedule dictates our relationship.”
Munson can't drive either, and Indianapolis doesn't have a strong public transportation system. “I'd try to meet people right after work so the guy didn't have to come pick me up or see me get off paratransit,” she says.
There are other logistical challenges, and everyone comes up with their own solutions. “Over dinner, I can't cut up my own food, so I just ask the waitress if someone in the back can do it for me—avoiding that awkwardness of having it done at the table—or I order something I can handle, like fish,” says Munson.
A neurologic condition can also limit the length and type of date you can go on. Because of fatigue, Franklin can't stay out all night, and outdoor concerts in the summer are difficult because she's sensitive to heat. “There are things that he has to be patient with. The root of it all is that he likes me and he wants to be around me, so he puts up with it,” she says.
BE YOUR OWN CARETAKER
Munson warns against the temptation to let a new partner assume caregiving functions too quickly. “I have a lot of friends who started dating someone and their partner wanted to take on caregiving responsibilities,” she says. “But then, when the relationship didn't make it, they were left without a romantic partner and a caregiver.”
As for Milliken, she had several shorter-term relationships. She broke up with a well-educated banker who spoke fluent French and was an Ironman triathlete after five months of dating because it just didn't feel right. “My mom hung up on me when I told her!”
Then, through a mutual friend, Milliken met Tyler, the man who would become her husband. “By date four, I was tipsy in a Korean hibachi restaurant and went into the bathroom and texted that friend: ‘I know it's only been a couple dates but I think you got me what I'm looking for,’” she recalls. Married five years, they now have two young children.
But others are still looking—including Johnson, who is trying to expand her social circle through events on Meetup.com. “I thought it would be helpful if I started going to things like a book club and met men with common interests who could see me going through my life—that's something you can't get on a website,” she says. “I drive. I have a business. I have a lot going on. When people actually see me in life, it's so different. I'm going to go out and hope that through a less pressured interaction, I will meet a person who is compatible in my life. And I think I will!”
That positive attitude and feeling comfortable in your skin is half the battle toward finding a good romantic partner, Kalb says. “It may take some time, but a disabling condition in no way rules out the possibility of a satisfying, long-term relationship.”
When Your Teen Starts Dating
The prospect of your child entering the dating world is daunting for any parent. But when that child has a neurologic condition, concerns about rejection, heartbreak, and basic safety are magnified. How can you help your child navigate the waters of youthful romance without becoming a helicopter parent?
“Parents need to encourage normal relationships, with dating being part of this. However, my opinion is not to push it,” says Patricia Osborne Shafer, a nurse specialist at the Beth Israel Deaconess Medical Center's Comprehensive Epilepsy Center in Boston. “If your child has cognitive, mood, or social problems, talk to your health care provider about these issues before your child starts dating.”
Shafer advises parents to have a good understanding of their child's developmental profile and other health problems, since helping them with dating—just like helping them with school and other life stages—may differ depending on those challenges.
To get a handle on whether your child is ready to date or to prepare him or her for a first foray into dating, consider these questions:
Does Your Teen's Condition Affect His Ability to Date?
Whether your child has seizures, impaired mobility, or cognitive problems, a neurologic condition may affect his ability to date. Assess your teen's limitations and determine how to deal with them. “Counseling with a social worker can help teens become more comfortable with themselves and how their condition affects them, prepare for disclosing and discussing the condition with someone they are dating or want to date, and think about how they would handle problems should they arise,” Shafer says.
Is Your Teen Comfortable Talking About Her Condition?
If your child has a less visible condition like infrequent seizures, is she keeping it a secret or can she talk about it openly? “If a child has well-controlled seizures, for example, there's no need to tell anyone right away,” says Shafer. Once your teen gets to know her date better, she may feel more comfortable talking about her condition.
Would Your Teenager Need Help During a Date?
“If your child has uncontrolled seizures, for example, you may suggest that he and his date go out in a group that would include, ideally, a close friend who knows about the condition and what to do if a seizure occurs, as well as basic first aid. Such a friend can also support your teen in talking about his medical situation should it come up,” Shafer says.
Can Your Teen Explain Her Condition?
Help your child learn about her condition and how to talk about it with peers. Ask your care provider or check with advocacy organizations for information about counseling and peer support that may help.
Can Your Teenager Drive?
If your child can't drive, he definitely won't want his parents chauffeuring him everywhere, especially as he gets older. “Arrange for your child to go out with friends who can drive and have him chip in for gas,” says Shafer. “Or, have your teen host a gathering at your home.”
Have You Talked About Sex or Contraception?
“People have different views about teens having sex and using contraception, but the bottom line is that unintended pregnancy rates are too high and the consequences for a young woman with a neurologic condition can be serious,” says Shafer. Some medications, for example, may increase the risk of birth defects, and pregnancy can also impact the condition itself—or vice versa. “As soon as a girl is capable of conceiving, parents must talk about this with her and her care team. Find out which contraceptive measures are most effective and will not interact with her medications. If your daughter does become pregnant and there is a risk of birth defects, talk to your health care team about folic acid supplementation.”
And don't forget about the boys, says Shafer. Although they can't get pregnant, they still need to learn about contraception—and if their condition is in any way inherited, that's something that should be addressed in any discussion of sexuality and pregnancy.
If you're not comfortable discussing these matters with your child, contact a nurse or counselor who can lead the discussion.
These online resources are designed to connect people with neurologic conditions:
* MyCounterpane (mycounterpane.com). This online “storytelling” tool, created by Milliken, allows users (mostly with MS, although some folks with other neurologic conditions contribute, too) to create journals, share personal video blogs about their lives, and connect with each other.
* The MDA Transitions Center (transitions.mda.org). Designed for young adults and teens, this section of the Muscular Dystrophy Association website has plenty of relatable blogs.
* The Epilepsy Foundation's community forums (epilepsy.com/forum-topics) and chat room (epilepsy.com/connect/chat). These forums allow people with epilepsy to connect and chat about a range of concerns, from attending college to navigating insurance questions.