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

Need for Resources

The need for resources was eloquently expressed by one wife:

MS is a whole life situation . . . and there is so much that isn't addressed... Resources, I would have really appreciated it... Here is the emotional thing, we need some help... We didn't get enough information to make empowering choices . . . dealing with quality of life things.

Resources needed included information about MS and the availability and use of complementary therapies, as well as support for themselves and their spouses. "It is difficult to find a reliable source of information," said one study participant.

On receiving the diagnosis, one man said, "I went to the MS Society immediately as soon as I hung up the phone . . . and got everything I could find to become more familiar with the disease and symptoms and what you do." Another said, "[B]ut I got on the Internet and kind of questioned the MS Society." Another husband also said, "As soon as she was diagnosed, [I went] on the Internet, and we got everything we could . . . tons of stuff available." One focus group participant said that the physician "also told us that Internet-derived information was not reliable information." Most of the men discussed reading, looking for resources, and trying to learn as much as possible about the disease.

Participants said of the resources available from the MSS, "There are brochures and that is the extent of it." One woman noted the following:

The brochures don't even have 'for information on this, call here or go there,' just general information like you would find at the doctor's office on PMS. It gives you just a glimmer of information and not much on choices.

         Daily coping was an issue. One spouse said, "Dealing with those daily quality-of-life things, you are talking about the pain... If there was a          Reader's Digest          kind of thing that we could lay our hand on initially, . . . [it would be] very helpful for us." The groups wanted to know more about MS; they said they needed information about treatments and medications.        

Husbands expressed the need for friends and family to know more about MS, too. One husband said "The biggest thing . . . or problem is the public view of MS . . . for my family, her family, and friends to know exactly what this is." Another husband stated, "The greatest problem that she's had . . . is outsiders understanding this, and even her own parents don't really comprehend how difficult it is for her." They experience resentment from friends. According to one focus group participant, a friend said "'We're always coming to your house. You don't ever come to ours'."

Lacking information and feeling insecure about options, many participants searched for other therapies that could complement or even replace the medical regimen. One husband commented, "We are also trying to find out other ways . . . or other supplements and some other treatments and what exercises to use and see what works for her." Another husband said, "My wife and his wife are swapping mixes on their vitamins right now. They're going through a kind of study on what they're going to take" and ordering "$800 worth of stuff" from a nutritional healing book.

The husbands shared complementary interventions that had worked for their spouses. One husband said "I do recommend water aerobics . . . her mobility has improved probably tenfold and she doesn't have as many [falls]." Other exercises used included treadmill walking and stretching. One wife drank "ground-up flaxseed oil and soy milk in the morning. She's got it down to a routine." Other methods used included aromatherapy, muscadine extract, magnesium citrate, bee stings, and so forth. One man said he talked to the physician before using herbs and vitamins. A chiropractor suggested some herbs for one patient, and "the doctor said 'if this works, I want to know because I will do a clinical trial on you'." There was a lengthy discussion of this topic.

Overall, both groups wanted to maintain their current lifestyles and needed "something more holistic. Quality of life is what it's about for us." The men discussed the need for support in matter-of-fact ways. They discussed going to support groups with their wives, saying "you can sit around and talk about it and learn how other people are dealing with it." Another husband discussed e-mail counseling but cautioned, "When you get that anonymity factor in, people feel a lot less inhibited." Some husbands looked for ways to increase their wives' activity because they didn't think their spouses were physically active enough, but all were involved with ways to increase their wives' "sense of worth."

The women's need for support was overwhelming, and they acknowledged their emotional needs with poignant descriptions. They said that MS was the "third person" in the marriage and that they, too, had the disease. They focused on the need to have someone listen, ask about and respond to their needs, and help them cope. They were quite open in identifying their emotional reactions and needs for support. One explained:

There are times I would like to roll around on the floor and scream and tear my hair out and say 'I'm all better now' and go home. You know! With women [who] understand where I am coming from.

The need for someone to reach out to them was eloquently described: "Just once, somebody out there someplace come and put their arm around me and say 'You are going to be fine. Here, let's take care of the [problem].'"

The women complained about the lack of interest from family and friends:

They say . . . 'How are you?' and you say 'fine,' and they don't even hear past the 'fine'; they don't really want to know that he had an exacerbation . . . and he had an accident and couldn't get to the bathroom in time.

Another participant, more reserved and private, explained, "Some people are just not comfortable talking . . . especially if it gets into the more intimate aspects of their life. E-mail counseling . . . where a person can submit a question . . . get that anonymity factor [would be helpful]." Participants' suggestions included "peer counseling from spouses [who have been] involved in it for quite some time;" "some genuine support around that [illness];" and "the names of other MS groups that your husbands go to." It was clear that spouses needed support for themselves, and they wanted support for their wives and husbands. They often felt overwhelmed, ignored, and neglected.

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