Common Family Reactions to Your MS Diagnosis - dummies

Common Family Reactions to Your MS Diagnosis

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

People who have been diagnosed with multiple sclerosis (MS) can have all sorts of reactions and feelings over the course of the disease. But you have to remember that all of these same feelings are shared by family members too. For example, here are just a few of the emotions that your family may experience:

  • Grief: This normal expression of loss is common. Just like the person with MS, loved ones have developed a picture of the family and the life you share together. When MS changes one member’s abilities to share in activities or carry out his or her everyday responsibilities, there’s a sense of loss. Family members may think “Our family is different, and things will never be the same” or “Who are we now that MS has changed our family?”

  • Anxiety: This reaction is normal among family members when someone they love has been diagnosed with MS. Children and adults share some common concerns: They worry about what will happen to this person — right now and over the long haul. They also worry about how this illness will affect their own lives.

    More specifically, the partner may wonder what will happen to the couple’s plans and dreams, as well as to their relationship. The children may worry that their parent won’t be there to take care of them, that they may catch the disease, or that they somehow caused the disease. And finally, aging parents may worry about who will take care of their adult child after they’re gone and, in the meantime, who will be able to help them as they’re aging themselves.

  • Anger: Any of your family members may feel anger over this unexpected change in their lives.

    “This isn’t what I signed up for!” is a very real feeling for some partners. “It’s not fair that my dad can’t play ball with me!” is one variation on a pretty common theme for kids who have a parent with MS. And older parents who need to provide care for their disabled adult child may very well wonder what happened to that peaceful, well-deserved retirement they’d been anticipating for so long.

  • Guilt: This common feeling happens when a person feels responsible for a family member’s MS. Parents and children are particularly prone to taking the blame and feeling guilty, wondering what they might have done to cause this.

    Guilt is also a pretty common reaction to angry feelings that don’t seem nice. For example, a partner may feel guilty for resenting an illness that the other person didn’t ask for and can’t control.

The tricky thing about families is that no two people are likely to experience or express these feelings at the same time or in exactly the same way. The result can be a bumpy ride on an emotional roller coaster. So, put on your seatbelts and get ready to acknowledge that each of you has a lot of feelings about this stranger called MS, and that it’s going to take some time and practice to get comfortable with those feelings.