Life with MS

Are we ever more vulnerable than when we're falling in love? Perhaps that is the reason why deciding how and when to tell that special someone that you have MS can be difficult and even frightening. Disclosure is a unique experience for everyone. If you have no obvious disability, the disclosure of MS may surprise your partner. With no outward manifestation of the disease, you may worry that they will deny its existence. If you use a cane or other mobility aid, your discussion may be an explanation of what MS is, and how it affects your daily life.
 
Whatever your situation, there are advantages to revealing your illness. Keeping secrets is often more stressful than telling. In fact, many people feel an immediate sense of relief after sharing their diagnosis, regardless of the other person's response. They are now free to be honest about themselves and their limitations.
 
"It seems to me that disclosing MS is one of the best tests you could ever find to determine whether or not a person will be a good partner," says Robin McBride, who married for the second time seven years after her diagnosis. "If they vanish after you tell, you know that isn't someone you would want in your life anyway. Loving people are supportive. They don't disappear. I don't tell everyone I meet, but I do tell the people who matter to me. It wouldn't be fair to myself to have to try to pretend to others that I am feeling well and energetic when I'm not."
 
Timing, for various reasons, is important. If your current relationship is progressing toward intimacy, delaying this discussion could jeopardize the very aspects of the relationship that make it such a special one. "MS is too big not to disclose. Keeping it a secret could present serious trust issues," explains Traci Seidman, Ph.D., a clinical psychologist who was diagnosed with relapsing-remitting MS over seven years ago. "It doesn't have to be a huge, one-time event. It can be approached as an ongoing process, presented lightly at first. If that goes well, questions will arise over time and disclosure will happen naturally."
 
Observe your partner's reaction. Are they supportive and understanding? Do you feel comfortable talking with them? Remember that it took time for you to adjust to your diagnosis. Give your partner time to adjust as well. Their initial reaction may be disappointing, but after awhile they may come to a place of understanding and acceptance. Try to be as patient with them as you're hoping they will be with you.
 
As is so often the case with MS, your attitude is crucial. "Whenever you tell anybody anything, your presentation, your mood, is going to have an impact on how they're going to perceive the situation and how they're going to feel about it," Dr. Seidman said. Be brief and nonapologetic. Ask your partner if they have any questions or concerns. This is the best indicator of how they are processing the information.
 
Over the years, Eileen Meister has tried different methods of disclosure. "I've tried the comic blurt: By the way, I have MS and you may not want to date/love/have sex/speak to me." She also tried an approach she refers to as the résumé. "We've been together awhile and there are some things you need to know before deciding whether or not you want to keep going." When she was younger and less secure, she often used the pity me/reverse psychology technique. "Oh, you don't want to know. You'll never want to see me again. Please don't hate me." These all failed, Eileen says, because she wasn't being open and honest. "My latest partner has been going through a lot with me and the approach that's worked with him has just been pure and simple honesty."
 
Nadine Boydston chooses simple honesty, as well. "I think it's a good idea to show the needles and the medical bills to anyone that you are courting. Show the reaction sites, too. Don't have any secrets. If they can't handle that, they can't handle any of it. Most people need to see evidence of what is going on for it to register."
 
If your relationship is a strong one, and remains intact following the initial disclosure, questions of a more intimate nature will eventually arise. A man with MS might doubt his ability to provide for a family or how MS will affect him sexually. A woman with MS might have concerns about pregnancy or a postpartum exacerbation. She, too may wonder how MS will affect her sexually.
 
"These things are going to scare you," said Dr. Seidman, who recently married. "But you need to appreciate connecting on a physical level for what it is. Making love is a beautiful way to bond. Keep it in that perspective. With or without intercourse, you are still capable of making love."
 
"We have MS, but we are not MS. Big difference," said Robin McBride. "We can continue to grow personally and spiritually. Maybe even more than we would have without the physical challenge. Every day, I remind myself that this is just my body. It inconveniences me, hurts me sometimes, and doesn't always do what I want it to. But that is not who I am."
 
Sometimes, people will disappoint you. This is just a fact of life. On the other hand, sometimes they surprise you with a wellspring of compassion and warmth that you never anticipated, as in the case of Harry Zanin.
 
"About 28 years ago, Marg struggled with disclosure," Harry says. "She was scared to death that if she told me, I would abandon the relationship and she'd lose me. This had happened to her before. We weren't engaged yet, but she knew I'd be proposing soon." After dining out one evening, Marg told Harry she had MS. Although she was well at the time, she had experienced a severe exacerbation when she was 21. Initially, Harry was shocked. It didn't take him long to realize, though, how difficult it must have been for Marg to keep her MS a secret for so many months. "We got married and this September was our 27th anniversary," he says proudly.
 
Robin's husband called her at work recently to share part of a letter he was writing to a friend. "I feel so honored to be a part of Robin's life," he wrote. "To be able to give love and support to someone so courageous."
 
"I didn't know he felt that way and it brought tears to my eyes," Robin says. That's the kind of love we want in our lives, and that's the kind of love that can endure the challenges of life with MS.
 
Telling Tips:

• Seek support from a close friend or family member.
• Practice role-playing with a friend. You'll feel more prepared when you are faced with the real thing.
• Be brief and nonapologetic.
• Visit a support group where you can talk to others who have experienced or are currently experiencing the same challenges.
• Call MSFocus: The Multiple Sclerosis Foundation and speak to a peer counselor.