Soon after I was diagnosed with multiple sclerosis, I felt the need to talk to people that were going through the same things as me. I'm a very social person and I love to interact with people. Not being able to share with anyone what I was going through just because they couldn't understand it or because they didn't have it didn’t feel right. I needed to find my tribe. The first thing I did was to open my Instagram account, looking for people who were living with multiple sclerosis and who I could relate to. To my surprise, there were so many accounts about multiple sclerosis, and I thought, “This is a great start.”
Later on, I wrote a couple of articles for blogs about multiple sclerosis, and I started to integrate myself more into the MS community. After reading a magazine where there was information about support groups and how helpful they were and how to start one, I decided that I wanted to help other people in my area and start my own support group. So, I called different MS organizations and decided on being part of the National Multiple Sclerosis Society. Then, I took training, became certified by NMSS as a support group leader, and from this point forward, I met more people with MS than I can count, and I started to experience that sense of community that I was desperately seeking.
I’ve had this spirit of service in me since I was very young. I always knew I wanted to help others. I just didn't know where to channel this need I had. But when I got diagnosed with MS, I realized, “OK, so this is where we’re going.” I knew at that moment that it was a calling. I understood that, that need that lived in me was a real thing. And I couldn't find a better way to satisfy it than by helping my MS community.
Not only am I helping others, but I am helping myself. It’s a two-way road. When I assist them, support them, share resources, it just feels good. It helps me with my own healing process. Because helping others gives me a sense of satisfaction that few things can provide, it has become therapeutic.
Many different social media platforms later, I’m proud to say that I belong to one of the greatest, most supportive virtual communities available at the moment. Needless to say that in times of a world pandemic, the online MS community has been so important to people that already lived in isolation because of living with this disease.
I think it's crucial to have a support system. When you are diagnosed with a chronic illness, you feel lost and a lot of emotions flourish. Bottling up your emotions can only lead to anxiety, depression, and isolation. It's very important to “vent it out,” to talk to people that share the same experiences, people that have the same symptoms, people that basically speak your same language and can truly understand what you're going through.
Unfortunately, my first group didn’t survive the pandemic. I was about to start an in-person support group right when the entire country went on lockdown due to the coronavirus pandemic. Bummer! We didn’t even have the chance to hold our first meeting. On top of that, our location was in the hospital grounds, and nobody wanted to get near the building, starting with myself. I ended up sundowning the group, and then my next idea was born: a virtual support group.
Currently, I’m leading a virtual support group for Spanish speakers called “Puertorriqueños Unidos por la Esclerosis Múltiple,” which translates to “Puerto Ricans United by Multiple Sclerosis.” This group was initially created for Puerto Ricans only, with the purpose of uniting Puerto Ricans living in Puerto Rico with the ones residing in the United States. But over time, Spanish-speaking MSers from other cultures started to join organically, and now we have a beautiful mix of Puerto Rican, Mexican, Uruguayan, and Cuban members with great success.
One of the biggest satisfactions I’ve had must be when I’ve heard from my support group members saying, “Thank you for bringing this type of resource or activity or speaker to the group. You’re always looking for things that we can benefit from.” Or when I see that the quality of life of one of my members has improved because they’ve had access to a new walking aid or product or gadget I presented to them, that makes the way they do certain things they are currently struggling with easier, and they’re able to reclaim their independence.
Believe it or not, a lot of people are not aware of the many different ways to find support nowadays. I’m still in awe of the fact that with today’s technology, many people don’t take advantage of the accessibility it provides to online and virtual support groups, blogs and vlogs, social media platforms, e-magazines, podcasts, webinars, free live video exercise sessions, art workshops, virtual events, etc. There’s something for everybody!
- The National Multiple Sclerosis Society offers in-person and online support groups around the country. Other resources offered by the NMSS to connect with others living with MS are: MS Navigators, Facebook MS community groups, MS Friends Helpline, eSupport Health, The Mighty: Multiple Sclerosis Connections, Happy the App, the Edward M. Dowd Personal Advocate Program, and MSWorld. You cand find more information on each right here.
- The Multiple Sclerosis Foundation also provides support to the MS community through support groups.
- The social network myMSteam has gained a lot of popularity among the MS community.
- Last but not least, WebMD’s Multiple Sclerosis Community: Support, Resources & Discussion Facebook group, for which I have the honor to be the community leader & moderator.
There’s literally a whole world of options to find support for people living with multiple sclerosis. There’s no reason why anybody should feel alone and/or isolate themselves. Living with MS is hard, not fun, and complicated. We can’t do this alone. I encourage you to look into finding support in any way that suits you, just don’t keep it all to yourself.
I understand that not everybody can open up easily about their health, especially in front of strangers. But starting with just listening to a podcast maybe, or participating in a webinar, or even taking part in Zoom meetings with your camera closed on listening mode only can be a good start. We need community, we need a shoulder to cry on, we need to be listened to and to be encouraged by others. Our emotional state affects our physical body and therefore our well-being. You’ll be surprised about the great nurturing relationships you could build in this MS community.
We’re all a big family. Let’s stick together and keep making noise, until we find a cure. In the meantime, connect with other MSers and find your own crowd. Don’t keep trying to do this all on your own. It’s so much more fun with friends. Give yourself a new chance and start networking today!
To connect with other people living with multiple sclerosis join our MS Facebook Support Group.
Photo Credit:Tempura / E+ via Getty Images
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