Ann Marie Johnson learned that she had multiple sclerosis (MS) in 2002, when she was 30 years old. Amid fears about losing her mobility, she had another worry. “Will I be able to find someone? Who is going to want me?” she wondered.
She watched her friends without chronic illnesses struggle to find the perfect partner. She thought, “If they're struggling, what chance do I have?”
At first, Johnson closed herself off to love. Every time she met someone she liked, "I'd automatically try to sabotage it by saying, 'He's going to find out and he's going to leave me,'" she says.
To stay positive, she began to look for people with MS who were in committed relationships. In a support group, she met a woman who'd been married for a long time. "Sometimes she's in a scooter. Sometimes she uses her cane. But all the time, he is there. That really put it into perspective," she says. "Seeing that made me feel like maybe there is hope for me."
Find a Partner You Trust
Every new relationship is built on a foundation of trust. That's especially true when you have MS. You want to be with someone who will love you and stick with you, no matter what your disease might bring.
"First and foremost, is this relationship going to be sustainable with a chronic disease? That requires having the ability to have a trusting partner," says Amy Sullivan, PsyD, director of behavioral medicine and research at the Cleveland Clinic Mellen Center for Multiple Sclerosis.
One of the qualities to look for is someone who will understand your limits and be willing to move forward in the relationship with you. If they aren't willing to accept you as you are, you may need to move on.
When -- and How -- to Make the Reveal
Once you've met someone you like, you have to decide when to tell them about your MS. That shouldn't happen right away.
"I look at my diagnosis in the same way I do my credit report. Do you share your credit report with everybody?" Johnson asks. "If the relationship is progressing in such a way that I feel comfortable enough … then I'll share."
Every relationship goes through phases. Telling someone about your medical history shouldn't happen on the first or second date, Sullivan says. "When you're moving into the phase of making this a partnership or you're committed to each other, that's when that information needs to be shared."
Begin the talk just as you would start a conversation about any other important topic. Explain that you have MS, and what that means. Then ask your partner if they have any questions. "Make sure you allow your partner time to process it and ask questions of you," Sulllivan suggests.
If your partner turns away at the news, it probably wasn't meant to be. One man that Johnson dated broke up with her a few weeks after she told him about her disease. "His rationale was, 'It's too much for me,'" she says. She didn't let the rejection deter her. "I dated some others. For many of them, MS wasn't even a factor."
Once you start dating someone, continue to be open and honest with them. If you need help talking to your partner, see a therapist. You can also enroll in the National MS Society's Relationship Matters program, which helps couples work on problem solving and communication.
Dating With MS
MS and the fatigue and pain it brings can make last-minute plans impossible. You'll learn to schedule dates around your symptoms.
"I try to do more dates in the afternoon, especially in the getting-to-know-you stage," Johnson says. "I'm at my best in the afternoon."
She doesn't do movie dates because they make her fall asleep, and she prefers lunches to dinners. She also avoids alcohol when out with a date. "I love a good martini, but if I'm sipping too much, I make a lot of trips to the bathroom," she says.
How to Handle Intimacy
Sex is an important part of any relationship, and it's another aspect that MS can complicate. Between 40% and 90% of people with MS have problems like a lack of desire, vaginal dryness (in women), difficulty getting an erection (in men), and trouble reaching orgasm.
The disease itself, fatigue and pain from MS, side effects of medicines, and depression can all lower your desire and ability to have sex. Sexual issues can be tough to talk about. If your neurologist doesn't ask, you'll need to bring up the topic. Together, you and your doctor can find solutions, which may involve things like lubricants, medicine changes, or therapy.
Remember that there are many ways to be intimate if sex isn't comfortable for you. "Touch, just holding each other -- there are lots of ways that a person can stay connected to their partner," Sullivan says.
The Journey to Love
Finding the right mate when you have MS is a journey. It takes time and effort from both of you. "Relationships grow stronger the more challenges that one endures," Sullivan says.
It took a few years, but Johnson did finally find someone. Now she's in an "amazing relationship." When they started dating 3 years ago, she wore stilettos. Today she wears flats and walks with a cane. "He saw the transition, and most importantly, he stood by me through the transition," she says. "When I'm walking, he's right by my side."
She encourages everyone with MS to stay open to the possibility of love. "Understand that it may take some time, but that's the nature of dating. Don't concentrate on your MS. You're more than your MS."