Beginner's Guide to MS: To the Caregiver and the MS Patient

Patient Expert

A diagnosis of multiple sclerosis affects not only the patient, but all members of the family. Today's focus is on the spouse and/or partner. My neurologist's office provides extra services (free of charge) to MS patients in the local area. These include an annual workshop which focuses on updates in the field of multiple sclerosis research, a monthly support group meeting for those with MS, and most importantly a special monthly support group just for newly-diagnosed patients and their spouses. Parents and boyfriends are even welcome.

I was invited to participate in these newly-diagnosed meetings even before I was officially diagnosed. Each session focused on a single topic related to MS. Participants usually arrived early; nurse Carol set out some goodies and soda; and a bit of socializing occurred before the session began. This was the time during which patients informally compared notes and spouses often checked to see how others were coping with the changes.

When one person develops MS, the family lives with MS as dramatic as that sounds.

The National Multiple Sclerosis Society provides excellent information specifically for Caregiving and Relationships. Here are some of my favorite recommendations for keeping your relationship strong.

1. Be supportive and stay positive.

Attending doctor visits and learning about the disease are excellent ways to stay educated and understand what you both are dealing with. Words of appreciation are always important in any relationship but even more so now that chronic illness has entered your lives. Speak of hope and a future, even when you have to talk about grief and loss. Focus on us and we, rather than I and you. You're in this together.

2. Keep communication open and maintain balance.

Ask questions and listen. Don't assume symptoms will be the same from day to day, as MS is an unpredictable beast. Also let your partner take care of you and give him/her time to be a good listener. Continue to maintain the give- and-take in your relationship.

3. Be creative and stay flexible.

Maybe instead of hiking this week you watch nature videos together. Think of new activities to share. If MS fatigue sets in or troublesome symptoms emerge, be willing to change plans. Friends will understand if you choose to stay home rather than go out on the town.

4. Take care of yourself too.

Maintain your hobbies, interests and friendships. Outside activities continue to be a healthy part of your relationship. Have a few select friends to confide in. Without taking care of yourself, you won't be able to take care of your partner. Remember in an emergency - place your oxygen mask on yourself first.

5. Stay educated and use resources.

The National Multiple Sclerosis Society provides excellent resources for education, support, and research. Use their publications and website to locate community resources, counseling, information, self-help groups (both online and in person), and the latest on research and treatments.

The most important recommendation I have to give to newly-diagnosed patients and their loved ones -

YOU are not your MS!! MS has not replaced your LOVED ONE. She/he is the same person you have known and loved, who now just happens to have MS. Stay strong through the ups and downs and put your relationship first.