Facing Multiple Sclerosis As a Parent
- “MeSsy” podcast host Jamie‑Lynn Sigler, 45, says that her journey with Multiple Sclerosis (MS) does not define her as a parent. She is a mom of two sons.
- Sigler has been living with MS since 2002. However, she didn’t go public with her diagnosis until 2016. Her symptoms started as tingling sensations in parts of her body that became more prevalent as she was filming “The Sopranos” in her 20s.
- 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.
- For parents, telling their kids about an MS diagnosis is often incredibly stressful, but Sigler urges others to be candid and confident.
- “I’ve been the most fearful that my physical limitations would take away my value to my children as a mom. And what I’ve learned over time is that my physical abilities have nothing to do with who I am as a mother,” she tells SurvivorNet. “I am everything that my kids need — and I would tell any parent out there that feels limited by a diagnosis … don’t let that define you.
Sigler has been living with MS since 2002 and is confident that her physical limitations have no impact on her identity as a mom of two sons, Beau and Jack, whom she shares with her husband, Cutter Dykstra.
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“Hopefully, through my experience, they will have more empathy, and they will have more appreciation and gratitude, and also just be really helpful, polite little boys,” Sigler adds. “They so far are, and I’m very proud of them. And they tell me pretty often how proud they are of me, too.”
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Sigler’s Message For The Newly Diagnosed
For those newly diagnosed, Sigler understands the need for time and personal readiness before sharing the news. However, she strongly believes that people aren’t meant to navigate life alone — especially when living with a chronic illness.
“Even if it’s just a handful of select people in your life, whether it’s one person at work, one person in your family, one other mom at school, whatever it may be … I know that whenever I had just one touchstone or one person that even just knew, it made things feel better,” the actress explains.
She insists open communication is essential, while highlighting the value of support groups as a key source of connection and understanding.
Sigler suggests taking “baby steps” when figuring out what the disease means for your life.
“It is important to communicate with at least a handful of people because it’s a very isolating experience regardless of whether you’re communicating or not. And so there’s no need to add any extra layer of suffering by doing this all by yourself,” she says.
Understanding Multiple Sclerosis
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 Multiple Sclerosis Society lays out the different types of multiple sclerosis:
- Clinically isolated syndrome (CIS): This is when an individual experiences a single neurological episode lasting 24 hours or less. CIS is what MS is diagnosed as until there is a second episode.
- Relapsing-remitting MS (RRMS): The most common MS among the million people battling the disease in the US, RRMS is marked by sudden flare-ups, new symptoms, or worsening of symptoms and cognitive function. The condition will then go into remission for some time before reemerging with no known warning signs.
- Primary progressive MS (PPMS): These individuals have no flare-ups or remission, just a steady decline with progressively worse symptoms and an increasing loss of cognitive and body functions.
- Secondary progressive MS (SPMS): This almost transitional form of MS progresses from RRMS to PPMS.
In addition to balance issues, numbness, and tingling in the limbs, other common MS symptoms include vision and bladder control problems. Mood changes and mental and physical fatigue are other symptoms people living with MS may experience, according to the National Institute of Health.
The National Institute of Neurological Disorders and Stroke explains this disease 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.
Power of Mindset. Don’t Stop Me Now
Currently, there is no cure for MS, although some people treat the disease using chemotherapy, medications, or steroid drugs.
Navigating MS As A Parent
Licensed clinical psychologist Dr. Marianna Strongin encourages people battling a disease or chronic condition like MS “to talk about your feelings with your immediate family.” She’s previously spoke about the importance of expressing your feelings in her advice column for SurvivorNet.
“Talking about difficult things does not cause more anxiety,” Dr. Strongin said. “It is NOT talking about the very thing that we are all afraid or worried about that causes our body to feel dysregulated and anxious.”
Specifically, with patients who may be scared to talk to their children about a diagnosis, Strongin said children can pick up on their emotions, so it may help to check in with yourself beforehand.
“Having these conversations may bring up deep emotions you may have stowed away. There is nothing wrong with showing our emotions to children as long as we can remain calm and give them a sense of safety,” Dr. Strongin said.
Sarah Stapleton, a licensed clinical social worker, encourages those facing serious illness and their families to be “patient” with emotions.
“It’s important that you understand how you communicate with your providers, but also with your loved ones,” Stapleton said. “We can’t always assume that people know what we need at a given time, and there are going to be times when you don’t want to speak about your diagnosis.”
Likewise, psychiatrist Dr. Lori Plutchik also previously explained to SurvivorNet that while some suffering from serious and/or chronic conditions seek emotional support from professionals or support groups, others feel completely supported by their inner circles. Both are valid.
“Some people don’t need to go outside of their family and friend circle. They feel like they have enough support there,” Dr. Plutchik said. “But for people who feel like they need a little bit more, it is important to reach out to a mental health professional.”
“Patients who have just been diagnosed … sometimes wonder how they are going to handle the diagnosis in social situations,” Dr. Plutchik added. “How much information they should share and with whom they should share the information, everybody is different.”
Ultimately, it comes down to what feels right. Family and friends supporting someone with a health struggle are encouraged to honor the patient’s preferences about when and how to share their diagnosis.
Contributing: SurvivorNet Staff
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