When you are diagnosed with MS, the whole family is affected one way or another, including partners, children and the extended family, as well as friends.
Telling the family
The first big question you may have is: do I tell the family about my condition? For many people with MS the disease is not obvious, so it is considered a personal decision whether to disclose the fact that you have been diagnosed with MS.
If you are affected by MS in a more explicit manner, requiring the assistance of family members on an ongoing basis, then it makes sense to talk openly about MS and how it will affect you, and them, in line with your short-term and long-term prognosis.
Once you have decided to talk to the members of your family about having MS, it is a good idea to sit down together and clarify how much help the family can provide and what sort of help you will need and are willing to accept.
Gauging the right amount of dependency on family members is critical for a number of reasons:
- A reluctance to become dependent on family members is a common and understandable reaction for someone diagnosed with MS. However, this can lead to suppression of the disease symptoms, which ultimately, will lead to a worsening of your situation.
- Family members may feel that their offers of help have been rejected, if you ‘hide’ your real needs related to the disease. This may lead to a lack of readiness to help the family member with MS.
- On the other hand there is also the danger of family members doing too much for you, even when you do not really need help and thus fall into an unnecessary dependency on the caregivers.
Adjusting to a new situation
It is important to work towards adjusting to a new family situation and any changes that the diagnosis might bring about. You and your immediate family will need to find the best way of managing and treating your MS condition, and how to deal with any future problems associated with the illness.
Since MS generally affects younger adults and women in particular, family and children especially will often be more affected by the disease. When undertaking family outings, holidays and the general daily running of the household, it is important to ensure that you take sufficient time to rest.
Family members need to learn how to deal with episodic attacks. Children often have irrational fears that their mother or father will die, and these kinds of issues need to be addressed seriously and sensitively. Some roles may have to be re-assigned, and all family members should share in the daily household tasks to make life easier for the person with MS.
If, as a parent, you have redistributed your areas of responsibility due to MS, take the following into account in re-assessing your family life:
- All available technical and financial resources should be used to make everyday life as comfortable as possible e.g. mobility aids for the house, or new working conditions for your partner;
- As a person with MS, you should face up to the loss of your total independence and not seek to deny it;
- You should obtain medical and psycho-social help from professionals, in order to face the challenge of the illness more effectively;
- Your partner should engage in sufficient extra-familial activities, to give them a break from the central role as primary carer; and
- The different needs of family members should be acknowledged and everyday life should be arranged accordingly.
