Connecting With Other Patients

By Miguel Alvarez
Updated 2024-03-24 13:37:17 | Published 2023-10-07 01:51:07
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Multiple sclerosis (MS) can often leave individuals feeling isolated due to the unique nature of each case. Even the people closest to us, like friends, family, and doctors, may not fully understand what we are going through. This is why connecting with others who have MS can have a positive impact on our lives. Finding someone who gets us helps us feel less alone.

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When I was diagnosed with MS in the 1980s, there were no medications available. All the neurologist could offer was the advice to take care of yourself. The only practical tip I received was to tie your shoes, which left me with many unanswered questions. During that time, there were no online resources or MS communities like iMedix. I felt lost and didn't know where to turn.

By the time my major relapse had ended, I was left with bladder and coordination issues, as well as fatigue. It was exhausting trying to explain these symptoms to my family, who couldn't fully grasp what it felt like living with MS. I craved understanding and support from someone who knew exactly what I was experiencing. That's when I decided to seek out an MS support group. Surprisingly, my neurologist and his nurse were unaware of such groups, so I reached out to hospitals and the National MS Society until I found one.

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Attending my first support group meeting at a local hospital was incredibly encouraging. Meeting individuals who had been living with MS for decades and were still leading fairly normal lives was inspiring. It was also comforting to connect with people in wheelchairs or using walkers who were still enjoying fulfilling lives. The room had about 12 people, including some spouses, and everyone was welcoming and interested in hearing my story. I exchanged numbers with a few individuals, and this connection provided immense reassurance.

After about a year, I didn't attend the group regularly anymore. My MS was progressing slowly, with no more relapses, and it didn't consume as much of my life. However, I continued going when there were significant changes, and as my disability increased, I took on a more active role in the group. Eventually, I became the group facilitator for five years and formed lasting friendships with three members. Sadly, one of them has since passed away, and the others have become harder to visit due to COVID-19, but I still cherish their friendship.

Support groups, especially in-person ones, can be difficult to find, much like my experience. Although the National MS Society maintains a list, it may not always be up to date. It's worth checking with your neurologist office or exploring local resources for information on groups in your area. However, support groups aren't suitable for everyone. Some individuals may feel anxious in social situations or not want to discuss their illness extensively. It is crucial to feel a connection and shared interest beyond the diagnosis when seeking friendships.

Thankfully, in the 21st century, there are various ways to connect with other people who have MS, whether through groups or one-on-one interactions. Online platforms such as Facebook or the MS Foundation host MS groups where users can comment, share updates, seek advice, or offer emotional support. These connections can be invaluable, and scrolling through an MS support page like iMedix's Multiple Sclerosis Community can still provide learning opportunities.

Additionally, online groups offer the opportunity to make friends. Members can exchange messages privately and, if they live nearby, even meet in person, over the phone, or through a different platform. Some groups organize video chats for members who wish to see each other. Online groups may provide a safer environment for individuals who experience social anxiety. They can choose to turn off their camera or exit the conversation if needed. This feeling of safety has become even more essential during the COVID-19 pandemic, as virtual interactions eliminate the risk of contracting the virus. However, it is important to note that online groups lack the personal connection found in face-to-face meetings.

Another way to connect with individuals who share our situation is by exploring other groups we are a part of, such as religious, professional, or community organizations. It is possible that someone within those groups also has MS. However, finding someone with whom we genuinely connect and share interests goes beyond sharing a diagnosis.

I am grateful for the existence of online groups because, during my diagnosis, many people with MS faced their journey alone. However, today we have the opportunity to seek out others with MS and build connections that can significantly improve our lives. Whether we connect through online platforms or in-person groups, the support and understanding we find can make a world of difference. To connect with other individuals living with multiple sclerosis, consider joining our MS Facebook Support Group.

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Miguel Alvarez is verified user for iMedix

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