Support Groups for People Living With MS

IMPORTANCE OF SUPPORT GROUPS

People with common interests and experiences may help you through the challenges that come with MS

For someone living with multiple sclerosis (MS), “supports” are family, friends, coworkers, or even people you meet on your MS journey. Believe me, I know—because the strongest support I found started with someone who was a complete stranger.

Adjusting to change

I was diagnosed on New Year's Eve 2002. There was no dancing that year, just me in a constant state of worry about what the new year would bring. My symptoms were sudden and scared me to death. It was hard to describe my invisible symptoms to my friends and family. My loved ones always saw me as the strong, independent type. Too often, I had to refuse invitations to hang out because of fatigue or pain, so there were fewer invites as each day passed. It was easier for people to think that I was being antisocial or just flaky because I didn't look sick. None of my friends or family knew anyone with MS, and this took an emotional toll on me.

Building my medical team

After my MS diagnosis, I found an amazing doctor who I trusted. She helped me understand what MS would mean for me. I remember joking with her in the beginning that this was like a marriage and it was important to meet my husband's family, which included the doctor, nurses, clinical supports, office manager, and even the receptionist. It was important for me to develop my medical supports. After all, we were all in this together, and working against the team would only hurt me.

Searching for more

I didn't really know too much about MS at that time. Online, I found websites and resources for local conferences. I decided to step out on faith and attend a conference. It was being held in my neighborhood, which made it easy to get to. Once inside, I immediately found a seat in the back and braced myself for the bad news I thought I was about to hear. At some point while the doctor was explaining what MS is, I ran out of tissues.

Then I felt a soft pat on my shoulder and a woman passed me a tissue. As I looked up to say thank you, we both gave each other the “you look familiar” look. We introduced ourselves and began sharing what brought us to the conference. Her daughter was recently diagnosed. As we talked, we discovered we lived in the same neighborhood, on the same block, one building away from each other. Immediately, a bond was created, but most of all, she assured me that I was not alone.

Finding community in support groups

For the first time since my diagnosis, I felt like I was part of a community and wanted to see and meet others like me, so I immediately contacted the National MS Society. They shared with me the many services they offer, such as:

  • Exercise and wellness groups
  • Recreation programs
  • Entitlement and benefits counseling
  • Employment programs
  • Support groups

Support groups became very important to me. They allowed me to talk honestly and openly with others who didn't judge or make excuses, but had similar experiences and emotions regarding living with MS. On some days, we would cry as we talked about the symptoms or the stigma. On other days, we would smile about simple acts of kindness extended by others. There were even days when we laughed at ourselves and the challenges we faced with MS. For instance, when dealing with bathroom emergencies, debating which restaurants had cleaner bathrooms. I began to look forward to seeing my new friends and hearing their stories about work, home, school, and vacation.

All in all, support groups offered me a way to talk about living first, and MS second. MS may cause interruption in life but it does not have to stop you from living to your fullest. My approach today is more focused on finding a new way of doing things that I once thought I could not do because of MS.

Today, I continue to go to support groups and even facilitate some groups. I realized that support comes in many different ways. It's important to be open to support in whatever form it takes. Sometimes, if you look up for just a moment, you might find support in an absolute stranger.