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My Advocacy Tips: Taking Care of Future Me With MS

Medically reviewed by Kelly Crumrin
Posted on March 25, 2024

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Transcript

00:00:00:00 - 00:00:25:20
Dani
I manage side effects from my medication by planning ahead for it. I always say past Dani has to take care of future Dani. So if it’s a treatment day, I make sure that I have that day off or the next day off, so I give myself space and grace. My treatment journey was pretty simple because I was presenting a lot when I went into the hospital.

00:00:25:22 - 00:01:09:05
Dani
So within a day and a half, they had my diagnosis, and they had a recommendation that I should go on the most aggressive treatment, so I began treatment for my multiple sclerosis within, I’d say, about three months of diagnosis. I had to advocate for myself for my treatment because my insurance denied it at first. A lot of times, if they reject what your doctor recommends, you can go back to your doctor and have them write a report to advocate for you to explain why one treatment is better than the other, to further explain your condition, and why it’s really important to try something that they recommend.

00:01:09:06 - 00:01:37:22
Dani
With multiple sclerosis, you don’t want to wait until you have more damage or more lesions, when there’s no cure for it. The treatment journey is really tricky, but I think it’s really important to listen to what the doctors say about it and what they recommend. It can be difficult with, like, this history of Black women’s care in the medical field, but I’ve found that personally, it’s been a game changer.

00:01:38:00 - 00:02:11:06
Dani
I found the doctor that I trust because I went to the ER, and I felt like I was being seen and paid attention to, not just for, like, the condition but for who I was. So I think that really kind of laid the foundation of me trusting the whole staff at the neurology department there. It was a difficult thing to kind of accept, but when a team who seems like they’re really committed to figuring out what’s going on and how to fix it ... I felt like it was something that was easy for me to trust.

00:02:11:08 - 00:02:36:04
Dani
I haven’t had any lesions since I found out that I had multiple sclerosis, so I think that ultimately, it’s good to have faith in the people who study that sort of thing. My name is Dani Darling, and I live with relapsing-remitting multiple sclerosis.

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For some people, a multiple sclerosis (MS) diagnosis leads fairly quickly to starting treatment. For others, the path is less direct, and it can take hard work and self-advocacy to get the care they need. MyMSTeam member Dani Darling experienced the less direct path, and we recently interviewed her about the need for self-advocacy when you have MS.

Dani, a singer, guitarist, songwriter, and producer, performs with her indie soul band, Dani Darling. She is also an identical triplet, a youth mentor, and a single mother. In the summer of 2021, just after releasing her Detroit Music Award-nominated EP, “The Future,“ Dani was diagnosed with MS after she experienced symptoms onstage with her band.

An MS diagnosis came quickly for Dani. “Because I was presenting with a lot of symptoms when I went into the hospital, within a day and a half, I had my diagnosis and a recommendation that I should go on the most aggressive treatment,” she said.

Unfortunately, Dani had just started a new job and was in the middle of switching insurance. “I had to advocate for myself for my treatment because I had just started working, and it was before my start date,” she said. “So even though my doctors had recommended a certain infusion, my insurance denied it at first.

“You can definitely have your doctor help you with getting the treatment that you need, regardless of what your insurance covers,” explained Dani. “If they reject what your doctor recommends, you can go back to your doctor and have them write a report to advocate for you, to explain why one treatment is better than the other, to further explain your condition and why it’s important. With multiple sclerosis, you don’t want to wait until you have more damage or more lesions.”

Read about how to appeal health insurance decisions about MS.

Dani was able to begin getting infusions of a disease-modifying therapy (DMT) for MS within about three months of diagnosis. She shared that she’s found a neurologist and a neurology department she feels she can trust, and she’s learned ways to manage the side effects from her DMT.

“I manage side effects from my medication by relying on family and by planning ahead for it,” she described. “I always say, ‘Past Dani has to take care of future Dani.’ If it’s an infusion day, I make sure that I have that day and the next day off. I give myself space and grace.”

Dani explained that she hasn’t had any new lesions since she was diagnosed, and she has faith that her DMT is working and in her doctor’s recommendations.

“I want others who have multiple sclerosis to know that the treatment journey is really tricky, but it’s really important to listen to what the doctors say about it and what they recommend,” she said. “I think some of the worst things that I did when I first got MS was start Googling it and looking at YouTube videos. It’s a difficult thing to accept, but I think that really, it’s important to just listen to your doctor.”

Talk With Others Who Understand

On MyMSTeam, the social network for people with multiple sclerosis and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with MS.

Have you had to advocate for yourself since being diagnosed with MS? In what ways? Share your experience in the comments below, or start a conversation by posting on your Activities page.

More Videos

In this video, Dani explains that one of the most important lessons she’s learned since being diagnosed with MS is how to listen to her body: “The times when I find myself not listening to my body, then it starts to speak louder to me.”

Watch Video

Dani works as the music program coordinator at a youth center. Watch this video to see how she finds support and community while managing multiple sclerosis in the workplace.

Watch Video

Posted on March 25, 2024
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Kelly Crumrin is a senior editor at MyHealthTeam and leads the creation of content that educates and empowers people with chronic illnesses. Learn more about her here.

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