Ann Marie Johnson learned that she had multiple sclerosis (MS) in 2002 when she was 30 years old. Amid the fear of losing her mobility, she had another worry. “Will I be able to find someone? Who will want me “She wondered.
She watched as her friends without chronic illnesses struggled to find the perfect partner. She thought, “If they fight, what chance do I have?”
MS often starts in your 20s or 30s – the best age for dating. A condition that causes pain, fatigue, numbness, and weakness doesn’t seem like a plus for a potential partner.
At first, Johnson fell out of love. Every time she met someone she liked, “I would automatically try to sabotage it by saying, ‘He will find out and he will leave me,'” she says.
To stay positive, she looked for people with MS who were in committed relationships. In a self-help group, she met a woman who had been married for a long time. “Sometimes she sits in a scooter. Sometimes she uses her stick. But it’s there all the time. That really put it into perspective,” she says. “When I saw that, I felt like there might be hope for me.”
Find a partner you trust
Every new relationship is based on trust. This is especially true if you have MS. You want to be with someone who loves you and stays with you no matter what your illness brings with it.
“Will that relationship be sustainable primarily in chronic illness? It requires the ability to have a trusted partner,” said Amy Sullivan, PsyD, director of behavioral medicine and research at the Cleveland Clinic’s Mellen Center for Multiple Sclerosis.
One of the qualities to look for is someone who understands your limits and is ready to move forward in the relationship with you. If they are not ready to accept you for who you are, you may have to move on.
When – and how – to make the reveal
Once you meet someone you like, you need to decide when to tell them about your MS. That shouldn’t happen right away.
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“I view my diagnosis the same way I view my credit report. Do you share your credit report with everyone?” Asks Johnson. “When the relationship progresses enough that I’m comfortable enough … then I’ll share.”
Every relationship goes through phases. Telling someone about your medical history shouldn’t happen on a first or second date, Sullivan says. “When you are at the stage where this becomes a partnership or when you commit to each other, this information needs to be shared.”
Start the conversation as if you were starting a conversation about some other important topic. Explain that you have MS and what it means. Then ask your partner if they have any questions. “Make sure you give your partner time to process it and ask questions for you,” suggests Sulllivan.
If your partner turns away on the news, it probably wasn’t intentional. A man Johnson had dated broke up with her a few weeks after she told him about her illness. “His reasoning was, ‘It’s too much for me,'” she says. She did not let the refusal stop her. “I’ve dated a few others. For many of them, MS wasn’t even a factor.”
When you date someone, 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 solve problems and communicate.
Dating with MS
MS, and the fatigue and pain that comes with it, can make last-minute plans impossible. You will learn to schedule dates for your symptoms.
“I try to make more appointments in the afternoons, especially during the introductory phase,” says Johnson. “I’ll be in top form in the afternoon.”
She doesn’t go to movies because it makes them fall asleep, and she prefers lunch to dinner. She also avoids alcohol when out on a date. “I love a good martini, but when I sip too much I make a lot of trips to the bathroom,” she says.
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How to deal with intimacy
Sex is an important part of any relationship, and another aspect that can make MS difficult. Between 40% and 90% of people with MS have problems such as lack of desire, vaginal dryness (in women), difficulty getting an erection (in men), and trouble reaching orgasm.
The illness itself, fatigue and pain from MS, side effects from medication, and depression can all decrease your cravings and ability to have sex. Sexual problems can be difficult to discuss. If your neurologist doesn’t ask, you need to bring the subject up. Together you and your doctor can find solutions that may include lubricants, drug changes, or therapies, for example.
Remember, there are many ways you can be intimate when sex is not comfortable for you. “Touch, just hold on to each other – there are many ways a person can stay connected with their partner,” says Sullivan.
The journey to love
Finding the right partner if you have MS is a journey. It takes time and effort on both of you. “The more challenges you endure, the stronger the relationships,” says Sullivan.
It took a couple of years, but Johnson finally found someone. Now she is in an “amazing relationship”. When they started dating 3 years ago, she was wearing stilettos. Today she carries apartments and walks with a stick. “He saw the transition and most of all he stood by my side during the transition,” she says. “When I go, he’s right by my side.”
She encourages everyone with MS to remain open to the possibility of love. “Understand it can take time, but that’s the nature of dating. Don’t focus on your MS. You are more than your MS.”
WebMD function
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SWELL:
Amy Sullivan, PsyD, Director, Behavioral Medicine and Research, Cleveland Clinic Mellen Center for Multiple Sclerosis.
Ann Marie Johnson, patient.
Cleveland Clinic: “Sexual Dysfunction in Multiple Sclerosis.”
Rush University: “Early Signs of Multiple Sclerosis.”
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