In Case You Missed It: Ask Me Anything
Earlier this month, we conducted a live “Ask Me Anything” event on our Multiple Sclerosis Facebook page. Community members, moderators, and MultipleSclerosis.net team members joined in, discussing topics such as diet and nutrition, sleep difficulties, treatment options, CBD oil, and managing stress. Other popular topics (which are discussed below) included the role of friends and family, adjusting to life with Multiple Sclerosis, impact on romantic relationships, and difficult symptoms.
The role of friends and family
During our live Facebook event, we asked the Multiple Sclerosis (MS) community, “How well do you feel your friends and family understand your MS?”. While almost 45% of participants said that their friends and family “somewhat” understood, another 39% said that their friends and family understood “very little” about their MS. Similarly, 12% of participants responded “not at all”.
Because MS is often an invisible illness, many community members shared that their friends and family do not fully understand the condition, which can be frustrating. However, many of you also shared advice for how loved ones can better support people with MS, such as:
“We really just sometimes need a shoulder to cry on, or just someone to listen to us. But we don’t want to be treated differently, like there is something wrong with us.”
“Be a sympathetic listener.”
“Stay flexible. Our needs and plans can change pretty quick, depending on how we feel and what the MS is doing. I hope my family and friends never ever take it personal if I cancel plans with little notice.”
“We definitely don’t want to be treated differently or as if we’re a burden. I also think it’s important (at least for me) to not feel babied.”
While every person affected by MS has different needs, according to our community members, some of the best ways for family and friends to help include listening without judgement, being flexible and understanding when symptoms interrupt your plans, and offering support without pity. While only you can fully understand your MS experiences and symptoms, many community members have found that their loved ones provide invaluable support on the MS journey, even if they don’t always understand.
Adjusting to life with MS
During “Ask Me Anything”, another popular discussion topic was “adjusting to life with MS”. When one of our community members asked, “Can you ever become accustomed to living with MS?”, participants shared many different responses, including:
“It takes time.”
“Every time I get accustomed to something, a week later it changes and it’s something else that makes it really difficult.”
“I try my best every day.”
“It took me 12 years to accept the reality that I had MS… It’s a daily battle dealing with all that MS brings, but I believe rolling with it and taking it day by day is most important.”
“We learn how to live with our new normal with MS, to live within our abilities despite disability. Keeping a positive attitude helps, and reaching out for help when needed.”
For many community members, it took time to accept and adjust to your MS diagnosis. As a result, some of you suggested that newly diagnosed people treat themselves with kindness and patience as they learn to adapt. Many of you also shared that you continue to experience new or changing symptoms, leading to ever-changing needs, and new adjustments. Because your MS symptoms can change and fluctuate over time, “being accustomed to MS” means learning how to adapt to these changes in your day-to-day life, which may be a long-term process. However, according to many of our community members, it is possible to adapt to life with MS, often supported by a positive attitude, the help of others, and perseverance.
Impact on romantic relationships
Plenty of our community members have strong, loving relationships, despite their MS. For some of you, MS has made your relationship even stronger, or helped you to leave a relationship that wasn’t healthy or enjoyable anymore. If you are concerned about enjoying your relationship while also managing MS, consider connecting with the MS community, or check-out these articles to learn more:
Another popular topic during our “Ask Me Anything” event was difficult symptoms. When asked, “Which symptoms are hardest for others to understand?”, one-third of participants said cognitive symptoms (such as cog fog, poor concentration, and memory), and one-third of participants said physical symptoms (such as pain, fatigue, and numbness). Finally, 27% of participants said that cognitive and physical symptoms were equally as difficult, and 8% said emotional symptoms (such as mood swings, depression, and anxiety).
As described by our community members, invisible symptoms are often the most difficult to explain, and even more difficult for others to understand. Especially when a friend, family member, or doctor says “Well, you look good”, it can be difficult to explain the cognitive, physical, and/or emotional symptoms you’re experiencing, and how they impact your day-to-day life. Although several community members shared that their family members, friends, and colleagues have become better at understanding MS over time, you can also check-out the MS Community to connect with people who understand the day-to-day impacts of MS symptoms.
During our “Ask Me Anything” live Facebook event, community members shared a variety of questions, experiences, and concerns related to MS. We hope that this information addressed some of your own questions and concerns, and we encourage you to reach out to the MS Community to share your story and learn more.