Life with MS

Creating and Building Relationships with MS A Dialogue between an MS Specialist Nurse and Psychologist

By Dr. Miriam Franco, MSW, Psy.D. MSCS, and Dorothea “Dottie” Cassidy Pfohl, RN, BS, MSCN
Miriam: You know, Dottie, I find whether you have a chronic illness or not, it’s helpful to keep in mind that intimacy, from a psychological perspective, simply refers to having authentic experiences with others, whether they are positive or negative. Certainly, when you have MS, it complicates things. There are questions about disclosing at work and to others, regarding when and with whom you share personal information, and how to cope with intimacy within various relationships as your MS progresses.

Dottie: Yes, we both know that MS throws a monkey wrench into normal experiences. First of all, the person with MS must grapple with learning about what MS is. With this understanding, one must then consider how to come to terms with their MS, accept it and integrate it into daily life and relationships. Then, there is the process of coming to know oneself with MS over time.

M: I agree It takes most people some time to even know what MS is and what it means in their life and how they come to accept it. And then, there’s the question of what is related to my MS and what isn’t? There’s a certain amount of your life and energy that you’ll attribute to your MS that requires realistic adaptation. But as you know, people have to be careful to not over-attribute things to their disease. And, of course, coming to know yourself and how MS affects your life also depends on where you are in life, when you are diagnosed, and how long you’ve been living with it. So it can be difficult to tease out what is a real adaptation to MS versus other insecurities you may have surfacing in your relationships that may be related to other things, such as being a teenager, a young adult, a parent, etc.

D: Yes and as a healthcare provider, I find just taking time to deal with the physical impact of MS and developing a plan of care becomes the primary focus. The immediate concern is to deal with signs and symptoms or the diagnosis and consider treatments. But you quickly realize, it’s not just the symptoms and securing or adjusting to medications that impact their daily lives, but also how MS is changing relationships as well.

For some people, their clinician may be the only person they share their concern about the impact of the illness on their immediate daily life. But not all people have open lines of communication with their providers. Over time, how well the person is going to live with MS and deal with others may depend on having the proper support at the right time. I feel strongly that it is wise for the care provider to consider these needs and include, or at least offer to include, other professionals in the person’s overall care such as a social worker or a psychologist, whether they have serious emotional problems or not.

M: I agree. If you are only seeing the medical provider, you are only dealing with one part of a person’s needs. Dottie, what are some of the common concerns you often hear about MS and relationships?

Love and Fatigue

D: The big one I hear about all the time is that loved ones or coworkers don’t understand the nature of MS fatigue.

M: I understand that is the most common complaint of those with MS about what their care-partners do not understand. I’ve heard it described as bone-wearying fatigue.

D: I call it bone-crunching fatigue.

M: That’s interesting. This has implications in all areas of life. For example, being too tired can be confused with being “lazy” or not being interested sexually or emotionally. That can be very upsetting to others, which can lead to misperceptions and judgments.

D: Yes, and then there’s the concern of fulfilling roles and expectations either on the job, with parenting, providing income, or just disappointing changes in relationships over time. And of course there’s the whole impact of changes in physical intimacy over time. Worsening illness and even normal aging can
precipitate problems.

M: Well, let’s start with intimacy and partners. The MS organizations have a good deal of educational materials available about this online. The take-home message is communication is essential to cope with changes in sexual intimacy and roles with men and women with MS.

D: Yes. From my standpoint, you become similar to a detective as an MS nurse. When someone shares concern for their sexual relationship and attributes it to being too exhausted for sex, I try to investigate if their fatigue could be related to not sleeping well or reflective of pain, depression, worry, or bladder problems that might interfere with intimacy. Then we can work on what to do about these symptoms. Getting the conversation started can be the first step toward improvement.

M: And mental health professionals can tease out the ramifications of anxiety, shame, and troubles in communicating. So it’s ideal when we work together as a team. You and I both know from experience that it takes a team. We can’t leave it all to the person to figure it out.

Teams and Peers

D: The importance of peer support is another key. Regardless of age and severity of the disease, MS support groups can be helpful.

M: I think peer support is good, but also forming relationships with health care professionals is a place to practice relationship-building with others. I think depending on where you are in life, there are different concerns with building relationships with MS. For example, younger persons have concerns about dating and disclosure. It’s difficult to disclose too early or late at work or in new relationships. People you’re already close to are going to know and they need to support you, so I don’t suggest waiting there.

D: True. I’ve heard it said that in a group, “you need to hear your own voice,” so not all groups meet the needs of each individual. Too much, too soon may be frightening. I have worked with people who had distorted images of MS and disability, or think of the one person they knew growing up with MS. MS is diagnosed earlier and there are many treatment options now. There is great promise about minimizing disability, and hopefulness for the future.

M: MS is not well understood by others. With new relationships, it can compound things. I do find that you need to be a good judge of character regarding to whom you disclose. If unsure at work, contact the MS organizations – like MSF, MSAA and NMSS – to learn more or look into discussing the issue with an advocate. As a general rule of thumb, I find it is important to not tell others too much, too soon until you can judge character or there is a realistic need to tell. Typically, others need to develop a context of knowing you and then knowing you with MS. However, there is no one size that fits all.

Sexual Intimacy

M: Dottie, you know that MS can affect sexual functioning in men and women. There are many things that can help with this, but I find the biggest barrier here is communication. It’s hard to talk about this.

D: It is hard and the healthcare provider may not have the time to do so, or may convey discomfort with discussing sex so the patient won’t bring it up. Cultural changes have made discussing sex less taboo. Nonetheless, it is important to be aware that for some, such things are not easily discussed, particularly with a member of the opposite sex. Yet, MS can affect sexual function. So, as an MS nurse, I feel this is an appropriate area to discuss and offer to coordinate a plan of care which may include referral to other professionals. There are many psychologists and social workers skilled in helping individuals and couples explore how MS may be affecting sexual intimacy and how to cope with it. The major MS organizations have referral resources for health professionals who know how to explore this and provide resources to improve sexual functioning and intimacy. Many things can be done to improve sexual functioning. Often just having an open conversation can be therapeutic. Then again, encouraging communication with a partner is important too.

M: Yes, there are issues of sexual functioning that are directly related to MS symptoms and many of these can be improved by working with knowledgeable professionals. Then, there are issues regarding attitudes and negative associations with sexuality that are not directly related to MS symptoms. So again, working with a mental health professional who can distinguish these things and help individuals and couples cope can go a long way in improving quality of life and building relationships.

Dr. Miriam Franco, MSW, Psy.D., MSCS, is a professor of Sociology at Immaculata University and a clinical psychologist.  She is a certified MS Specialist and has published two research studies on the use of Guided Imagery to lower anxiety and injection anxiety with multiple sclerosis. She is on the Health Care Advisory Board of the Multiple Sclerosis Association of America and is Health Partner with the National MS Society.

Dorothea “Dottie” Cassidy Pfohl RN, BS, MSCN, although now retired from full-time work, serves as a resource for the MS Society as a member of the health care advisory committee and the highly successful program, ‘WAMS’ – Women Against MS. She has served as clinical coordinator of the Comprehensive MS Center of the Department of Neurology at the University of Pennsylvania Health System.