Living with Multiple Sclerosis: How It Impacts Friendships, Family, and Marriage 🌟
Carolyn Opens Up About the Impact of Multiple Sclerosis on Her Relationships Discover How She Handles Friendships, Family, and Her Marriage
MS and Relationships The Lowdown
By Carolyn Deming Glaviano, as told to Alexandra Benisek
💥 I was diagnosed with multiple sclerosis on my birthday. Talk about a surprise gift! It all started with some eye pain, which led me on a whirlwind journey through doctors’ offices and eventually to the shocking diagnosis. You know, I kept thinking, “No, really, I’m just here for eye pain.” But life had other plans for me that day. I’ll never forget the support I received from my friend, Cassie, who brought me saltines, ginger ale, and almonds and stayed with me as I was admitted to the hospital. It’s truly amazing how something as challenging as a diagnosis can bring out the true colors of our friends. 🎁
How Multiple Sclerosis Affects Friendships 🌈
One thing I’ve learned from my journey with MS is the incredible importance of having someone who will listen, understand, and discuss the ups and downs of life with a chronic illness. My friend and roommate, Sarah, became my rock during my medical appointments. Not only did she provide unwavering support and act as my advocate, but she even held my hand and petted my hair during a spinal tap when doctors usually want everyone out of the room. Talk about a true friend! 🙌
Facing a diagnosis like this also allowed me to understand my own needs from my friends on a whole new level. Friends like Cassie, who was there for me at the hospital, went above and beyond what was expected of a professional relationship. We transcended that barrier and she became a true friend in every sense of the word. 🌟
My long-distance friend, Sarah, stepped up as a central point of focus for everyone in my life. She became the go-to person for updates, answering questions, and keeping everyone connected. Having someone like her in my corner was invaluable. 👍
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But it’s not just about the emotional support and understanding. The physical limitations that come with MS also present challenges. As my disability has progressed, I’ve experienced changes in my ability to walk, my stamina, balance, and even fatigue levels. Fatigue, in particular, can be incredibly debilitating. Some days I have to cancel plans because my body just won’t cooperate. And you know what? My friends never make a big deal out of it. They understand that it’s not me being flaky or unreliable. It’s me making a difficult, physical determination of what I can and can’t handle. Their empathy means the world to me. ❤️
Multiple Sclerosis and Its Impact on Family 👪
First and foremost, I must say that I am incredibly lucky to have such a supportive family. However, the dynamic has definitely shifted since my diagnosis. Instead of me taking care of my parents as they grow older, they are now taking care of me. It was an adjustment for all of us, but with open communication and a willingness to adapt, we’ve found a great space where we can support each other. 💕
I’ve had to learn how to express my needs to my mom. At first, I wanted her to be a mind reader, to anticipate what I needed without me having to say it out loud. But that’s not realistic. We had to work on our communication, and we’ve grown a lot through that process. It’s important to openly discuss how you need support from your loved ones. Remember, they can’t support you if they don’t know how. 🗣️
Even with such a supportive family, there have been times when I had to set boundaries and ask them not to say certain things or request specific types of help. It’s a learning experience for all of us, and it takes effort and understanding from both sides. But when we come together and communicate openly, it strengthens our relationships. 🤝
Navigating Marriage with Multiple Sclerosis 💑
When I was diagnosed with MS, my boyfriend (now husband) and I were in a long-distance relationship. Despite not having been together for long, he dropped everything to be by my side when I went into the hospital. He even organized a “birthday redo” with all of my friends since I had received my diagnosis on my birthday. He has been nothing but supportive throughout this journey. I count my lucky stars every day. 💖
Now that my MS has progressed, I face mobility challenges, but my husband is always there to lend a helping hand. He carries things for me so I can focus on navigating stairs or other obstacles. He takes care of tasks I can no longer physically handle, like walking the dog. It’s all about finding new ways to support and love each other. ❤️
We’ve also learned the importance of communication in our marriage. On rough days, I ask if he’s in a headspace where he can handle listening to my struggles. It’s essential to ensure he gets the support he needs too, as he plays a significant role in our partnership and my well-being. Sharing the load with others, whether it’s a friend or a family member, can make a positive impact on everyone involved. 🌻
Talking Openly About Multiple Sclerosis 🗣️
In the past, talking about my MS in the workplace wasn’t something I was comfortable with. I was uncertain about embracing my diagnosis and worried about potential prejudices. If you look fine on the outside, people may not understand the daily challenges you face. I would even question whether I had to pretend to look sicker than I actually was to convince others that I had MS. The burden of managing an invisible illness can be heavy, particularly in a professional setting. So, I chose to focus my energy on my job and, as a result, my recovery was reserved for the weekends. But that changed. 😌
Over time, and with much therapy and self-reflection, I began opening up about my MS to colleagues and employers. The phrase “dynamic disability” became my go-to when discussing how my condition fluctuates. At my current job, I have a supportive leadership team that respects my needs, allowing me to decide whether I can attend in-person meetings or not. It’s a small but significant gesture that makes a world of difference. 🌟
That being said, not every workplace understands the challenges faced by people with MS. I’ve encountered obstacles, like securing proper disability parking, which can be a frustrating process. However, something I’ve learned through personal experience is the power of advocacy. My personal motto has become, “If you don’t ask, you don’t get.” Even if someone says no, advocating for yourself builds self-assurance and sets boundaries that positively impact your work-life balance, health, and overall well-being. Remember, most people genuinely want to help, but they may not always know how. Providing clear direction can make a world of difference. 🌍
Q&A: Addressing Additional Concerns and Interests ❓
Q: Are there any specific diets or nutritional strategies that can benefit individuals with MS? 🍏
A: While no specific diet has been proven to cure or treat MS, maintaining a healthy, balanced diet can support overall well-being. Some studies suggest that diets rich in fruits, vegetables, whole grains, and healthy fats can be beneficial. Additionally, limiting processed foods, saturated fats, and excessive sugar intake may help manage symptoms. However, it’s crucial to consult with a healthcare professional or registered dietitian before making any significant dietary changes. 🥦
Q: How can exercise and physical activity impact the progression of MS? 🏋️
A: Regular exercise and physical activity can play a crucial role in managing MS symptoms and maintaining overall health. Engaging in a variety of activities, including aerobic exercises, strength training, and balance exercises, can improve mobility, reduce fatigue, and enhance overall quality of life. However, it’s essential to work with a healthcare professional to develop an exercise plan that suits individual needs and abilities. 🏃♀️
Q: Is there ongoing research and development of new treatment options for MS? 💡
A: Absolutely! The field of multiple sclerosis research is dynamic and continually evolving. Scientists, medical professionals, and pharmaceutical companies are actively engaged in developing new therapies, medications, and management strategies to improve the lives of people with MS. Staying up-to-date with the latest research and discussing new treatment options with healthcare providers can ensure individuals are informed about potential advancements in MS care. 🔬
In Conclusion 🌈
Living with multiple sclerosis is undoubtedly a challenge, but it doesn’t mean life loses its color or joy. Through my own experiences and the support of my friends, family, and partner, I’ve discovered the power of connection, communication, and self-advocacy. MS may present obstacles, but it also provides opportunities for growth and resilience.
So, if you’re navigating this journey, remember to lean on those around you, open up and share your needs, and don’t be afraid to advocate for yourself. And to everyone, whether you have MS or not, let’s continue spreading awareness, fostering understanding, and supporting each other with kindness and empathy. Together, we can make the world a more inclusive place for everyone. 🌍💙
Reference List:
- National Multiple Sclerosis Society: www.nationalmssociety.org/
- Multiple Sclerosis Association of America: www.mymsaa.org/
- WebMD – Multiple Sclerosis Health Center: www.webmd.com/multiple-sclerosis/default.htm
- Mayo Clinic – Multiple Sclerosis: www.mayoclinic.org/diseases-conditions/multiple-sclerosis/home/ovc-20231882
- Multiple Sclerosis Research: www.msra.org.au/
Image Source: Kriangsak Koopattanakij / Getty Images
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Note: These insights and personal experiences are provided by Carolyn Deming Glaviano and may not reflect every individual’s experience with multiple sclerosis.
