Family life

Abdelhakim Janati and his wife, Fatima, and their two boys, Haroum and Haitam at his parents house, Morocco.

MS can affect many aspects of daily family life, particularly if a person has symptoms such as fatigue, eyesight problems and cognitive changes. Couples may find that they have to review their roles within the household and this can be difficult. For example, a family with two incomes may have to learn to cope on one, or one of the partners may have to take on extra responsibilities for running the home or caring for children.

The impact of MS symptoms on family life

It is estimated that as many as half of people with MS experience mild cognitive problems. Because cognitive difficulties in MS are “invisible” symptoms, family members may misinterpret behaviours or reactions on the part of the person with MS. Difficulties with memory, problem solving and concentration may be interpreted as the family member not caring or not listening, being uninterested or unwilling to cooperate. Correct information can be the key to helping families understand and cope with cognitive problems.

Fatigue is another misunderstood invisible symptom of MS. Often a family member with MS appears to lack motivation when, in fact, the person is experiencing MS fatigue, a type of tiredness or exhaustion that is a symptom of the disease.

When the family has a clear understanding of fatigue and its impact on the person’s ability to function, they may be more keen to help with household tasks, reconsider family activities that may be strenuous for the member with MS, and, in general, re-organise the house and habits of the family in away that helps the person with MS conserve energy. It is important for the family to understand the importance of energy conservation strategies that can help the person with MS have more energy to spend with the family.

How families cope

Each member of a family has his or her own coping style. On finding out that a family member has MS, some people look for as much information about the disease as they can find and perhaps prefer to talk to others about their experience with MS.

Others may deal with news of the diagnosis by keeping busy with other activities in order to avoid thinking about MS.

Each person brings into the “MS experience” his or her own way of coping. Different coping styles within the same family can be complementary or contradictory. Contradictory coping styles may lead to conflict within the family.

Family members should be encouraged to cope with MS in their own individual styles, while respecting the coping styles of other members. However, communication is key, and if a family traditionally has dealt with problems by ignoring them, assigning blame or using some other, ineffective coping style, the family’s way of confronting MS will be the same, at least without the help of a family counsellor or psychologist.

MS can add stress to a relationship. The unpredictability and progressive nature of the disease, the changes and sacrifices that might be required and the impact of some symptoms are all obstacles that make it difficult for both the person with MS and their partner to cope. It may be useful for a couple to seek help from a counsellor.

MS affects every member of the family. Learning about the disease and its possible effect on the family can help people face challenges as they arise. Families that are informed about the different resources available can choose those that best suit their needs and lifestyle.

Telling your family you have MS

Parents and other family members 

Disclosing your MS to your family, who may have known something was wrong anyway, can help to begin the coping process. Grief and worry are normal emotions for family members to feel when someone they love has news about their health. Parents in particular worry about their children, even after they have grown up. Other common emotions can include guilt if parents feel that they have somehow ‘given’ their children the condition. 

Your children 

How to explain MS to your children can be worrying, but you are the best judge of how, when and what to tell your child about your MS. Children are naturally likely to have questions, feelings and worries about the impact of MS on you and your family, and it is a good idea to encourage them to share these with you. It may be important to explain, for example, that MS is not contagious. 

MS Explained to Children (available in French, German and Italian) is a great video series to support people telling their children about MS.

Partners or potential partners 

If you are dating, or have recently met someone, you may not want to disclose your MS initially. Usually, it is not a good start to a relationship to keep secrets, but you also need to feel close enough to them to want to share important information. There is no one ideal time – you will know when you feel that the relationship is ready for this next stage. If the person is right for you, they are likely to be supportive. If they aren’t, then perhaps they weren’t ready or right for you anyway. 

If you already have a partner, then your MS will change their life too. This can be worrying for both of you and you may need to support each other. Make sure you give your partner time to absorb the information, and remember to keep communicating about it over time. 

Remember you cannot predict the future. All relationships have their ups and downs, and any number of things can bring them to an end or make them stronger. As with all issues that affect couples during their relationship, communication and understanding are really important. 

Madrid, Spain, 10/2011. Saturday afternoon at the zoo is a time for Almudena and her husband to lavish attention on their son. The outing will fatigue Almudena, but she recognises the need for a 3-year-old boy to burn off energy and be out exploring the world. Credit: Lurdes R. Basol. Published here by kind permission of the European Multiple Sclerosis Platform.

Madrid, Spain, 10/2011. As Antonio’s world becomes more confined by the walls of their apartment, his wife Milagros Albertos feels her role is evolving from wife and partner to nurse or mother. She is losing important elements of her own identity and is often faced with difficult choices such as going out with friends or staying in to show her support. As their financial situation worsens, they are forced to consider moving in with Antonio’s mother. Credit: Lurdes R. Basolí. Published on this website by kind permission of the European Multiple Sclerosis Platform.