Living the Best Life with Multiple Sclerosis: Embracing Challenges and Advocating for Yourself

It is crucial for patients with Multiple Sclerosis to understand that their diagnosis is not a death sentence. With proper treatment, the disease can be managed, allowing you to continue living your best life.

Challenging MS Stigma

By Caroline Craven, as told to Hallie Levine

I learned I had MS almost 20 years ago, in 2001. I was only 35, yet I couldn’t walk or see without assistance. Today, I’m thriving. It’s so important for patients with MS to know that their diagnosis is not a death sentence. With the proper treatments, the disease can be controlled, and you can continue to live your best life.

After my MS diagnosis, I had to reinvent my life. I had to give up my marketing career – I couldn’t work in an office 8 to 10 hours a day with my sensory overload and fatigue. Before MS, I was a whitewater kayaker, mountain biker, and rock climber. Suddenly, I found myself so exhausted I could barely walk from my car to the parking lot.

The Stigma Surrounding Multiple Sclerosis

Why There’s Still a Stigma:

It’s actually gotten better over the last decade, especially among medical providers who better understand what it’s like to live with MS. They realize now that treatment for MS involves more than just taking a pill or getting a shot. In order to thrive, people with MS need to learn life skills and get community support. You don’t really know what it’s like to live with MS unless you walk in someone’s shoes. Some of us are relatively physical and able to stay active, while others need wheelchairs. Unfortunately, the general public still doesn’t know much about MS. People confuse it with muscular dystrophy, for example – one of the questions I get asked a lot is, ”Are you part of Jerry’s Kids?” One reason that it’s tough to understand is because there are so many unknowns about the course of MS. When you first get your diagnosis, you have no idea if your illness will be invisible to others, you’ll lose your coordination, or if you’ll be confined to a wheelchair. Even when people know what it is, they often have a romanticized view of it. They think of celebrities like Selma Blair. But the public doesn’t see the part where those people have trouble walking from the parking lot into a store, or the sideways glances they get when they use their cane.

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Q: How can we raise awareness and challenge misconceptions about MS?

It’s crucial to be straightforward and open about living with MS. By sharing personal experiences and explaining symptoms in relatable ways, we can help others understand the daily challenges we face. For example, I often describe my sensory overload as standing in a room with strobe lights and blaring sound. This analogy helps others grasp the constant strain I experience in busy environments. Additionally, emphasizing how temperature sensitivity affects us, even if it may seem subtle to others, can foster understanding and support from family, employers, and friends.

Advocating for Yourself with MS

How You Can Advocate for Yourself:

The first step is to find a doctor you feel completely comfortable with. Once you’ve found your doctor, keep a running list of questions and notes to run by them when you have an office visit. So many of us are afraid to tell our doctor that our current treatment doesn’t seem to be working or we’ve had a very cruddy week.

I also recommend keeping up with the latest medical news on the National Multiple Sclerosis Society website (nationalmssociety.org). This way, you can discuss promising new treatments with your doctor. You also need to make sure they know about and are on board with any supplements or complementary treatments you use.

Q: How can we effectively advocate for ourselves when it comes to MS treatment?

Building a strong relationship with your doctor is key. Keep the lines of communication open and don’t hesitate to voice any concerns or doubts about your current treatment plan. Sharing specific symptoms or setbacks you’ve experienced helps your doctor tailor a more effective approach. Additionally, staying informed about recent advancements in MS research equips you to have meaningful discussions with your healthcare provider about alternative treatments or therapies. Remember to involve your doctor in decisions regarding supplements or complementary treatments to ensure compatibility with your medical regimen.

Embracing Challenges and Living Your Best Life

Change Your Focus for Your Best Life:

Now, as a person and expert living with MS, my work takes me across the country, consulting and speaking to help others with the disease live better. It brings back memories of my early career, when I worked with startup companies, and it’s exciting and inspiring. The bottom line is that MS is a random, progressive disease. We, as people with MS, can’t control where it takes us. But we can focus on how to live our lives better.

Q: How can we embrace challenges and live fulfilling lives despite the uncertainties of MS?

Despite the unpredictability of MS, we have the power to shape our lives and find fulfillment. By shifting our focus from the uncontrollable aspects of the disease to personal growth and resilience, we can thrive. Seeking new opportunities, engaging in meaningful experiences, and connecting with others in the MS community can create a sense of purpose and bring renewed joy into our lives. Remember, MS may present challenges, but it doesn’t define who we are or limit our ability to live our best lives.

Living with MS is undoubtedly a journey filled with ups and downs, but with the right mindset and support, you can navigate the challenges and embrace the possibilities. Together, let’s redefine what it means to live with multiple sclerosis.

Q&A

Q: How can I manage fatigue and sensory overload caused by MS? There are various strategies for managing fatigue and sensory overload. Pace yourself and prioritize rest. Incorporate regular breaks and naps into your schedule. Avoid overstimulation by minimizing exposure to loud noises and bright lights. Planning activities during periods of less fatigue can also help. Experimenting with relaxation techniques such as deep breathing or mindfulness meditation may provide relief. Consult your healthcare team for personalized strategies to manage these symptoms effectively.

Q: Is it possible to exercise with MS? Absolutely! Exercise can be highly beneficial for individuals with MS. Engaging in regular physical activity helps maintain strength and flexibility, manage stress, and improve overall well-being. Choose exercises that suit your abilities and preferences, such as swimming, yoga, or low-impact aerobics. It’s important to work with a healthcare professional or physical therapist to develop an exercise plan tailored to your specific needs and abilities.

Q: How can I find community support for MS? Joining support groups or connecting with online communities of individuals living with MS can provide invaluable support and understanding. They offer a safe space to share experiences, exchange advice, and find comfort in knowing you’re not alone. Organizations like the National Multiple Sclerosis Society and local MS chapters often have resources and programs that facilitate community engagement. Reach out, connect with others facing similar challenges, and build a strong support network.

Q: Are there any natural remedies or alternative therapies that can help with MS symptoms? While there isn’t currently a cure for MS, some individuals find relief from symptoms through natural remedies or alternative therapies. These may include dietary changes, herbal supplements, acupuncture, or mind-body techniques like yoga and meditation. It’s crucial to consult with your healthcare provider before incorporating any complementary treatments to ensure they don’t interact negatively with your prescribed medications. Keep in mind that natural remedies or alternative therapies should never replace conventional medical treatments.

Q: How can family and friends support someone with MS? Support from family and friends is invaluable for someone living with MS. Educate them about the disease, its symptoms, and the challenges it presents. Encourage open communication and be responsive to the needs and limitations of the individual with MS. Offer assistance with daily activities or transportation when necessary. Most importantly, provide emotional support and understanding. Sometimes, simply being there to listen and offering a shoulder to lean on can make a world of difference.

Reference List: 1. National Multiple Sclerosis Society – nationalmssociety.org 2. Exercise and Multiple Sclerosis – National MS Society 3. Overview of Multiple Sclerosis – Mayo Clinic 4. Managing fatigue in multiple sclerosis – Neurology 5. Alternative Therapies for Managing MS Symptoms – Verywell Health

Photo Credits: Header Image: MF3d / Getty Images Inset Image: Caroline Craven (Source: Caroline Craven, life coach and MS advocate, Pasadena, CA.)

Now it’s your turn! Share your thoughts and experiences with MS in the comments below. Don’t forget to share this article with your friends and followers on social media to help raise awareness and support those living with MS. Let’s make a difference together! 😊✨