Husbands and Wives Living With Multiple Sclerosis

Nancy Fleming Courts; Amanda N. Newton; Linda J. McNeal

Disclosures

J Neurosci Nurs. 2005;37(1):20-27. 

In This Article

Relationship Changes

Relationship changes were described as both positive and negative. The spouses noted how MS had changed their roles and sometimes led to role reversal. Men discussed their new role as caregiver. Comments included: "It was tough. . . but within 3 years, we as a couple had adapted," "My marriage is stronger than it has ever been," "I've become a better caregiver, no doubt about it," "I feel needed. I knew I was needed," and "You are thrown into a role, [you] learn it; it's a very healthy thing." The husbands consistently discussed the issues using the word "we."

One wife described becoming the main breadwinner as follows: "But that is the hardest thing . . . the role reversal, 'cause he is at home." She had been a homemaker while her children were growing up, establishing close relationships with them. Her husband, because he was at home and available, was now receiving and writing e-mails to one of their children who was away at college. She explained how her husband "got to know their daughter better. That has been real positive" and both said that "he is the only dad who e-mails almost every day . . . and I say 'wait a minute, this is from me, too!'" She appreciated that they were close but experienced loss because she and her daughter "were so close and now they are closer, so that is a positive thing." This woman's sense of loss was evident in her facial expression and tone of voice. Another woman related her role reversal to having to do all of the driving, saying, "That is a different thing, always being the one."

One woman explained:

We have been married 31 years. . . and we hardly ever had an argument. And he never lost his temper, and in the past 5 years he's blown up and we've had shouting matches and I would stop and say, "Calm down, why are you so upset?" . . . The physical things are not as bad as the mental things.

Many of the outcomes described by participants had to do with losses and decisions. One wife explained that she needed some "sincere and honest conversation" about remaining in the marriage. She said:

To stay! You know, and I think that all of us at some level or another have to work through that process. This may sound really terribly selfish but I didn't sign on for this. And facing all these things . . . as much as I love him . . . Number one, can I do that, and number two, what is it going to cost... [S]ome sincere conversation around those kind of [issues] would have been really helpful for me, I think.

Her honest and sincere sharing of her true feelings set the stage for additional comments. One woman stated, "I feel so sorry for him, and I feel sorry for me, too! I have the disease too, it's not just one person."

The wives expressed both a desire and a need for someone to allow them to share the dark side of their feelings, ask about them and listen to their answers, and to whom they could be honest about the difficulties they are experiencing. One woman who stated that this was her first opportunity to be heard had a litany of losses. She began by noting how difficult it had been, and said, "[My husband] has a lot of sexual dysfunction. Part of it is the drugs, ... [I] don't know if I can do this [stay married]. Can I do it, and do what I want to?" These are hard decisions. Another wife said, "He is always afraid that I am going to leave him. He says, 'I'm afraid you are going to dump me someplace [nursing home] and leave me.'"

The wives described how loss of employment was difficult for their husbands: "He went out on disability and that was a real blow to him . . . emotionally;" "[MS] relieved him of his occupation and everything, and his depression was pretty dark, pretty deep, and pretty extensive. He didn't drive for a year." All of the women mentioned loss of employment, but most of the group denied that they had financial problems, stating they had good insurance.

MS caused relationship changes with significant disagreements and arguments in marriages that had been harmonious and calm before the diagnosis of MS. One wife reported,

[My husband said], "Why are you going [to psychotherapy]? I'm the one with the disease." And I said, "Well, guess what? It affects all of us!" It's like I told him, it's like three people in a marriage, and MS is the other person.

The spouses sometimes made comments in the heat of the moment, and the participants reported them honestly. For example, one spouse said, "I hate myself for saying it, but I said, 'It is easier to be you than to live with you! It is a good thing that it isn't me that had MS, 'cause you wouldn't put up with this kind of attitude.'" Stresses of living with MS were challenging and often hard to accept.

In spite of all the adjustments and role changes, the participants identified areas of growth and strength. One woman said:

In a lot of ways I think it has brought us closer... On a lot of levels he gives to me in ways that I don't think he would if he wasn't so aware that I was constantly vigilant with this situation.

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