Expert Support
The Impact of MS on the family
Margaret Anne Speak, Counsellor
MS rarely comes into a family quietly. It roars onto the scene, bringing with it shock, frustration, anxiety and sorrow. It changes everything in its path, disrupting the normal rhythms of daily life and forcing families to develop new connections and routines.
Living with MS is an ongoing challenge for most families. While the initial diagnosis is devastating, it is often the chronic, unpredictable nature of MS that puts the greatest strain on family dynamics. As time progresses and functional abilities change, family members may struggle with unwelcome feelings of guilt, anger or resentment. To cope with the life changes and emotional stress associated with MS, families must find effective ways to nurture and support each other.
Margaret Anne Speak, a counsellor at Living Systems in Vancouver, encourages families living with MS to view their situation as a challenge, not a life sentence. “It’s important for a family to accept that this [MS] is the hand they’ve been dealt,” she advises. “They are all in the crisis together and they have to find ways to live as normal a life as possible.” While this may be easier said than done, there are strategies that can help families adapt to their changing circumstances.
Communication is the key
Communication is the key to positive family relationships. “Quarrels, disagreements and emotional upsets are a normal part of family life and happen even in the healthiest families,” says Margaret Anne. “Don’t be afraid of your emotions. Instead of bottling up these powerful feelings, talk them over with your family – involve as many family members in the discussion as possible. Try to determine how much of your emotional distress is caused by the added stress of MS and how much is caused by your normal family dynamics.” Everyone responds to MS in a different way, so discussing your feelings frankly and openly will help other family members understand your emotional reactions. “The best thing that a family can do is to listen to each other,” explains Margaret Anne. “It’s not unusual for family members to carry more anxiety about the situation than the person with MS. Without meaning to, you can actually become part of the problem if you impose the burden of your concerns on someone who is chronically ill. Respect the fact that a person with MS needs to feel that they are still in control of their life and can make their own decisions. Be curious. Ask questions. Find out how they want to live their life and try to help them find solutions that will work for them.”
Take charge of your own life
Families living with MS often struggle with feelings of guilt and anger. Faced with the many losses of MS, families tend to lash out at each other instead of confronting the disease that is disrupting their lives. The situation can be complicated by the fact that some people with MS are very self-focused. They put their own needs first and become increasingly demanding and critical of those around them. A spouse or partner can end up feeling trapped and overwhelmed by responsibilities.
“As a caregiver and a family member, you have to take charge of your own life,” states Margaret Anne. “You have to find the courage to say ‘I need something for myself.’ In the end, it will be healthier for your relationship if you can learn to balance your need to be ‘for yourself ’ and ‘for your loved one’ at the same time.” Making time for your own friends and interests will help you maintain your emotional equilibrium and may restore a feeling of normality to your life. Check with your local MS Society to find out if there are any support services in your community that will help you arrange regular breaks from your caregiving responsibilities.
Accept the reality of life with MS
MS makes physical, emotional and financial demands on a family that inevitably lead to changes in lifestyle and daily routines. “But be careful not to make adjustments that go beyond the requirements of the situation,” cautions Margaret Anne. “Sometimes, out of love and concern, families can be overly protective. By treating someone with MS as an invalid and protecting them from reality, you prevent them from acquiring the skills and confidence they need to maintain their independence.”
Children have difficulty expressing negative feelings
Children are often deeply affected when MS strikes their family but may find it difficult to articulate their feelings. They may express their fears by becoming aggressive or withdrawn or by doing poorly at school. Teenagers may feel embarrassed by their parent’s disabilities or rebel against the restrictions of their family life. Maintaining open lines of communication and answering questions honestly will reassure children and help them deal with the emotional pressures of living with MS.
“Parents shouldn’t overreact if their children seem rebellious or angry. Family quarrels are normal, especially during the teenage years,” explains Margaret Anne. “However, if teens have negative feelings about MS, they should be encouraged to have an honest discussion with their parents and work together as a family to resolve problems. Some teens are uncomfortable sharing their concerns with their parents and may find it easier to talk things over with a friend, relative or school counsellor. Group counselling may be another way for teens to deal with painful emotions that they can’t discuss directly with their families.”
Plan for the unexpected
For many families, the unpredictability of MS is the greatest source of tension and anxiety. Symptoms change from day to day, making it difficult to plan family activities or make long-term commitments. When plans fall through or outings have to be cancelled, disappointment and resentment can aggravate family conflicts. But, just like teenage rebellion, unpredictability is a normal part of life. It’s simply intensified in families living with MS. Anticipating the unexpected, maintaining a flexible, creative attitude and having a backup plan ready – just in case – can help families minimize the disruptive effect of MS on daily activities. Ultimately, MS affects everyone in a family and each family member must take responsibility for their own reactions and responses to the changing situation. Talking openly about feelings and treating each other with patience and understanding can help families find the strength to live with the demands of this capricious disease.
Seeking professional help
Sometimes, people find it easier to talk about their fears and concerns with someone outside their family. Professional therapists, support groups and spiritual advisors have experience dealing with sensitive issues and can provide valuable advice and support. If you’re feeling overwhelmed, don’t hesitate to ask for professional help – it is often the best way to avoid a crisis and protect your emotional well-being.
This feature is intended solely for informational purposes and is not a substitute for routine or urgent medical evaluation, treatment or consultation. Margaret Anne Speak’s guest editorial should not be construed as a medical opinion aimed at establishing a diagnosis or course of treatment. Individuals who are being treated should not construe information here as replacing or superseding recommendations of their own physician.
