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Why I Keep Going to Support Groups After 20 Years with Relapsing Multiple Sclerosis

In the course of nearly 20 years living with relapsing multiple sclerosis (MS), I’ve met a lot of people who tell me they don’t like going to support groups. Those who were diagnosed many years ago sometimes find the meetings monotonous, or that it’s too painful watching other people struggle as their disease progresses.

Over the same two decades  I have lived with relapsing MS, I have watched the mango tree I planted as a seedling grow tall in my garden, blossom into flowers, and bear more than two dozen fruit. These two activities—listening to people in support groups and nurturing the mango tree —may seem unrelated. But for me, there’s a connection, and it may be helpful to others living with relapsing MS.

Going to group meetings is one of the best ways to feel supported as I manage my condition and come to terms with aspects I can’t control. I don’t find the support groups boring any more than working in my garden is boring. In fact, if the only reward for gardening was to see flowers or taste fruit, I could go to any flower shop or supermarket. Part of the satisfaction is just being patient, watering the plants, and overcoming the feeling that I’m in a hurry to get somewhere.

In a similar way, there’s no urgent goal in a support group with people who have relapsing MS.  I try to listen with patience and appreciation as people tell their stories or ask their questions. Giving up that sense of urgency, I sometimes hear stories that move me as much as anything I see in my garden.

Over the years, I’ve learned that support meetings provide empowerment for patients like me. And if there’s one thing I can share with others, it’s the importance of remaining active, live a full life, and being proactive about your care. At some point after I was diagnosed, doctors taught me the importance of researching the disease landscape, finding a treatment that works well for me, and remaining positive. All of these approaches have been helpful, and in group meetings, I can give others the same advice I was so lucky to receive.

I like to share my motto with others:  “Don’t let a relapsing MS diagnosis dominate you, rather, see what you can learn as you make changes to your routine.” For many years, I struggled to deal with everything — living with relapsing MS while raising two kids, having a job that required travel, and not having the energy to do some of the things I really loved, like dancing and going to the beach. But through the advice and encouragement of others, I realized I could continue to do these things – if I made some adjustments to my lifestyle. I learned to slow down a little. I started to work part-time, and that allowed me time to develop a social network and increase my contact with others who had relapsing MS.

I also started to spend more quality time with my friends, and I even started exercising, which I was initially afraid to do after my diagnosis. It turns out, the physical and mental benefits of exercise make an enormous difference for people with relapsing MS. I also found more time to be in my garden, where remarkable things happen when you learn to adjust your sense of time.

These days, I try to give people the same encouragement my children gave to me. It was my daughter who helped me to find the National MS Society and their support group offerings, and she would also tell me what she was learning about MS in nursing school. She emphasized the importance of staying compliant with my treatment regimen. She was completely right.

I always encourage others to stay up-to-date on research because that’s how I found a treatment option that works for me. Click here to find out more. My daughter showed me an article about an oral pill, and I was really looking forward to seeing if it could fit into my treatment plan. However, my doctor preferred to take a “wait and see” approach to see how the drug was working for other patients before prescribing it for me.

Not wanting to wait, I started doing my own research. While everyone’s experiences are different, for me, the comfort and convenience of an oral pill have made an enormous difference. Now I tell people how important it is to read all of the latest information, be your own advocate, and dedicate as much time and energy as it takes to find the treatment option that’s best for you.

When I go to support groups, I can see that some people haven’t quite figured out the strategy I’ve learned over the past 20 years. A huge part of that is creating a support network that helps you to stay positive as you manage your condition. Once you have that network, maybe you’ll start to think about it the same way I think about my garden, and watch and listen with patience as beautiful stories start to unfold.

This post was authored in conjunction with Novartis and its agents. Clavedia B. was not compensated for her contribution. 

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