We recently sat down with Dr. Peggy Crawford to discuss relationships and intimacy. As a health psychologist, Dr. Crawford has worked with individuals and families with multiple sclerosis for the past 25 years. She was a member of the staff at the Mellen Center for Research and Treatment of MS at the Cleveland Clinic and then a faculty member in the Department of Neurology at the University of Cincinnati. Over the years, Dr. Crawford has been actively involved with the National MS Society as a presenter, consultant and committee member and with CAN DO MS as a member of the program staff.
In your experience working with people with MS, what do you see as the greatest challenges that couples face when it comes to MS and intimacy?
I think that the primary challenge is communication. And it is not always that couples aren’t communicating. Sometimes it has more to do with how they’re communicating. Couples express themselves to each other through body language and actions in addition to words. This can include distancing themselves in time and space, spending less time with one another, expressing feelings through changes in facial expressions. This nonverbal communication can make you feel like you’re not communicating much, when in fact you are communicating a lot.
In many cases, there is also just a lack of communication. When people aren’t talking to each other, a lot of assumptions get made about what the other person is thinking or feeling. If it continues to grow, this can become a major obstacle that results in very little, if any, physical intimacy, emotional intimacy, sexual intimacy.
Do you have any advice for overcoming communication barriers?
One of the ways that people can overcome these barriers is clarifying with each other why there is not more communication. Is it related to changes that have come about in their relationship due to MS? How the roles and responsibilities have changed? How jobs have shifted? Often more jobs fall onto the support partners and things end up feeling really out of balance. Sometimes having somebody from the outside observe that to a couple can be very helpful.
I’ve worked with couples where the support partner avoids talking to the person with MS about what is going on, because the person with MS becomes distressed. People will do almost anything to avoid having somebody cry or look upset or become angry. I’ve seen this most often with husbands who are support partners. They don’t want to talk about it, because she becomes upset, they can’t fix it, and then they feel guilty. Sometimes it takes professional assistance to get that communication up and going again.
It can also be helpful for people to share the assumptions that you’ve made about why you are not communicating and why you are not intimate.
Do you have any examples of how this can be done?
I remember a couple who had been married almost 30 years who came to see me. They were sitting together in the waiting room holding hands. This was an initial visit, and the woman had been referred, because her neurologist was concerned that she was depressed. During the interview, I reviewed the questionnaire that she had filled out that would tell us if she was experiencing symptoms of depression, and one of the questions had to do with interest in being sexually active. With some discussion about this one item, it was clear that here was a couple who clearly cared about each other but had not had physical intimacy, including hugging and kissing, for four years.
I asked each of them why they thought they weren’t intimate? And would they like to be physically intimate again? Would they like to have sex? “Absolutely,” both of them quickly nodded their heads. Here they are holding hands, tearful, and I said, “Let’s talk about why each of you thinks you’re not being physically intimate.” It turned out that each of them had a very sure sense of why they were not initiating physical intimacy.
The woman (who had MS) said, “It’s because I’m sure he is no longer attracted to me. I’ve had to take steroids, which have caused me to gain weight. I don’t initiate because I just don’t think it’s going to work. I just don’t think he is going to want to have sex with me.”
He looked at her and said, “Really? That’s why you think we’re not having sex? I don’t initiate. In fact, I don’t even hug and kiss you anymore, because I’m so worried that is going to lead to sex, and I know you get those spasms in your legs and your legs are stiff, and then it hurts you, and the last thing I want to do is cause you pain, so I just don’t go there.”
It was amazing, because they went from being tearful to laughing about this, and saying, “Can you believe this? All the kids are out of the house. This is our perfect opportunity in life to be physically intimate as often as we want, and we’re not at all.” They had never ever had a discussion with each other about this.
I only saw that couple once, and three days later, the woman called me and said, “Guess what? All the way home we talked about this, and realized instead of making assumptions, which made us both feel bad, we need to talk to each other when these thoughts come into our heads.”
To me, this is a vibrant example of where miscommunication and making assumptions and not checking out your assumptions and feelings with the other person results in people losing that closeness that many, many couples want with each other.
What other barriers may be getting in the way?
Another barrier is not having accurate or enough information about MS. People struggle to talk about sex under the best of circumstances. Many times people don’t even realize sexual symptoms can be related directly and indirectly to their MS. And sometimes even healthcare professionals are embarrassed to bring it up. That’s why I value the information that’s available on nationalMSsociety.org.
Sometimes within a couple, people just have very different coping and communication styles. Some people want to know everything about MS. Other people would rather not know all the details, and wait and see what is going to happen. Some people are also just talkers, and cope by talking about things out loud. Other people are more the silent types. These are characteristics that couples bring to MS. These are not characteristics that MS brings to couples. So, if you already had differences like these, MS doesn’t necessarily make that better. On the other hand, some couples say that the diagnosis and the changes that came about as a result, such as the shifting of responsibilities, was the kick in the butt they needed to address their communication and relationship issues.
The bottom line is that communication takes practice. I think sometimes we assume that everybody somehow should have learned all of this growing up, or that all people in committed relationships know how to communicate. And that is often not the case. People need to practice. Relationships also need care and attention – they need to be a priority. There needs to be positive sentiment communicated, and positive physical contact. You can start by turning off the television, not being on your phone, making eye contact, summarizing what you think the person just said to you. Practice using I statements: “I feel sad.” “I feel frustrated when such and such happens.”
Check back in March for Part 2 of our interview with Dr. Crawford, during which we will explore questions from the Discussion of the Month.
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