Living With MS: Finding Your Community of Support
- Actress Jamie-Lynn Sigler says her journey with multiple sclerosis made her realize that true strength comes from her friendships and community, and that asking for help is never a sign of weakness.
- MS is a disease in which the immune system eats away at the protective covering of the body’s nerves. Coping with a chronic illness like MS is an ongoing process.
- Therapy and counselors can help to provide professional emotional support during the challenging transition period from diagnosis to treatment, but friends, family, and support groups often play a critical role as well.
- “I think for me, asking for help … I thought would relay that I was weak, that I was incapable, that I was less than. None of that was true, and the only way that I was able to learn that was by starting to ask for help and realizing how much people love to help and be of service,” Sigler tells SurvivorNet.
- If you are struggling mentally after a challenging diagnosis, check out SurvivorNet’s specially curated mental health resources.
While on her MS journey, Sigler, who went public with her diagnosis in 2016, says she’s noticed that many people — women in particular — often hesitate to ask for help when they need it.
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The actress aims to reassure anyone listening to her story that asking for help isn’t a sign of weakness or incapability.
“It just means that this is something that you need support in, but that doesn’t mean that you can’t be support for people in other areas of their life,” Sigler says. “That just opens you completely up.”
Those facing a difficult diagnosis like MS, especially in the beginning, may hesitate to open up about new and evolving needs, but Sigler says she’s reached a point where she is “unashamed.”
“My friendships, my community, I would be nothing without,” the actress adds. “I think we all need to see ourselves through the people who love us’ eyes. Sometimes I think that’s the way we can be reminded of our value, power, and grace.
“My friends have been supportive of me through every inch of this journey, of when I wanted to keep things a secret, and they kept my secret safe, to when I physically needed them, emotionally needed them. But they always reminded me that MS didn’t define me, that when they looked at me, they didn’t see MS. And that I was a great friend and a great mom.”
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“Community is everything,” Sigler adds.
Sigler’s Advice For The Newly Diagnosed
“If you’re newly diagnosed and you are scared, you feel alone, I see you. I get it. That is a very real thing to feel. I think it’s a common thing to feel. I think it’s very important to allow space for those emotions to flow through you and process. I don’t think those are things that you should push down or push away,” Sigler says.
“They’re imperative to your healing. They’re imperative to your moving forward — processing these really powerful emotions that come along with a diagnosis. But through that, I think is where then you get to this place of acceptance. Acceptance doesn’t mean that you have to like the situation that you’re in, but it is what it is. And the only way to move forward is with acceptance.”
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The actress stresses that there are many resources available for those struggling with an MS diagnosis, including her own podcast MeSsy.
“There’s so many resources out there for people to feel the community and the support that they need,” Sigler says. “… there are a lot of people out there that are reaching out and looking for help on so many different platforms. So don’t rob yourself of that. I did for 16 years, and I’m so grateful for the MS community and the way that they see me and support me, and I hope they feel the same from me. Amazing.”
Understanding Multiple Sclerosis (MS)
Multiple sclerosis causes the immune system to attack cells that form the protective sheath that covers nerve fibers in the spinal cord. The disruption leads to communication problems between the brain and the rest of the body.
Once the protective barrier is damaged, the spinal cord struggles to communicate to the body’s arms, legs, and other parts to function normally.
The National Institute of Neurological Disorders and Stroke describes MS as: “An unpredictable disease of the central nervous system, [MS] can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted.” Researchers believe it is an autoimmune disease.
Currently, there is no cure for MS, although some people treat the disease using chemotherapy, medications, or steroid drugs.
Finding Support Through A Health Battle
Feeling support from friends, loved ones, or coworkers can help you express your feelings and maintain a positive attitude while facing a health-related struggle yourself, or helping a loved one through theirs.
In a previous column for SurvivorNet, licensed clinical psychologist Dr. Marianna Strongin reflected on the power a good support system can have, noting it’s “important that you surround yourself with individuals who care and support you throughout your treatment,” which she said can be an “arduous chapter.”
That being said, it’s also important to know your limits on what you can handle during treatment.
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“Going through treatment is a very vulnerable and emotionally exhausting experience,” she wrote. “Noticing what you have strength for and what is feeling like too much is extremely important to pay attention to as you navigate treatment.”
If a close friend or relative is living with a condition like MS, there are a number of day-to-day responsibilities you can offer to take over to help them.
You can help complete household chores or running errands during the day, which your loved one may not have the time or energy to do. Or, you can simply lend an ear so patients can talk through their feelings, which can help them cope with what they are experiencing during this difficult time.
Experts advise against simply asking how you can help, with no specific offer. Instead, be proactive and offer tangible things you can do for them to make their lives easier. That could include bringing them food, cooking them dinner or playing a board game with them, anything that will bring them joy.
A support system can be made up of loved ones like family and friends. It can also be comprised of strangers who have come together because of a shared experience (like support groups). Mental health professionals can also play a critical part role.
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After a diagnosis, “some people don’t need to go outside of their family and friend’s circle. They feel like they have enough support there,” psychiatrist Dr. Lori Plutchik told SurvivorNet.
“But for people who feel like they need a little bit more, it’s important to reach out to a mental health professional,” Dr. Plutchik added.
Contributing: SurvivorNet Staff
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