Personal Experiences and stories

Coping with the Emotional Impact of Muscular Dystrophy Introduction Muscular Dystrophy (MD) is often associated with physical limitations—but the emotional weight it carries is just as real. I’m Anshuli Singhal, a software engineer living with MD for 15 years. Once a top student with big dreams, I had to reimagine my path when life threw this challenge my way. This article isn’t just about my condition—it’s about hope, adaptation, and thriving emotionally while living with a progressive disease. The Emotional Side of Muscular Dystrophy Living with MD can often feel like a silent emotional battle. As your physical abilities slowly decline, you’re also processing loss, fear, isolation, and uncertainty. People often notice the wheelchair but overlook the inner strength it takes to smile, to study, to work, and to keep going. My Journey: From Top Student to Tech Professional From an early age, I was a high achiever. I loved solving problems, coding, and learning new things. Even after being diagnosed with MD, I didn’t give up on my academic goals. I graduated as a software engineer and now work in the tech industry—something that once felt impossible during the initial years of diagnosis. But beneath the success story, there were emotional battles: dealing with slow muscle degeneration, missing social events, and wondering if my body would keep up with my mind. Coping Mechanisms That Worked for Me 1. Accepting the Diagnosis and Redefining Success Acceptance didn’t come overnight. At first, I saw MD as a barrier. Over time, I began to see it as a lens through which I view life differently—more mindfully, more appreciatively. My Tip: Redefine success on your own terms. Your pace is valid. Your efforts count. 2. Prioritizing Mental Wellness Alongside Career As a techie, it was easy to get lost in logic and code—but I had to pause and acknowledge my emotional health. Burnout and frustration were real. Therapy helped me learn how to cope constructively. My Tip: You can be high-functioning and still need emotional support. That’s not weakness—it’s wisdom. 3. Building a Strong Emotional Network My parents, colleagues, and a few close friends became my emotional lifeline. I also found peers online who had MD and understood what I was going through. My Tip: Open up to someone you trust. You don’t need many people—just the right ones. 4. Tech Tools That Support Emotional Resilience Being in tech, I naturally turned to tools that helped me mentally: Journaling apps like Day One Meditation apps like Headspace Productivity tools like Notion to stay focused Wheelchair-friendly smart home gadgets to feel more independent My Tip: Let technology assist your emotional well-being—it’s more than just convenience; it’s empowerment. 5. Staying Purpose-Driven in Life and Work Despite the physical challenges, I found strength in purpose. Every line of code I write, every person I inspire through my story—it gives meaning to the struggles I face. My Tip: Purpose anchors emotions. Whether it’s work, advocacy, or art—let your passion drive you. Online Communities and Mental Health Resources Sometimes, the most meaningful support comes from people you’ve never met in person. Online forums and MD support groups helped me find relatable voices and emotional clarity. Helpful Platforms: MDA Community Forums Reddit – r/MuscularDystrophy Facebook – MD Support Networks Free Mental Health Resources: 7 Cups of Tea (emotional support chat) BetterHelp (offers discounted or sponsored therapy) Final Thoughts: Growth Over Guilt Living with Muscular Dystrophy doesn’t mean you stop growing. It means you grow differently. Yes, it’s hard. Yes, some days feel heavier than others. But through it all, I’ve learned that emotional strength is not about never breaking down—it’s about getting back up every time, even if it takes a while. To everyone out there living with MD or supporting someone who is—your feelings are real, your fight is brave, and your future is still bright. FAQs Q1: Is it normal to feel emotionally overwhelmed with MD? Absolutely. Emotional overwhelm is common with progressive conditions. It’s okay to seek therapy, community, or even journaling to express what you’re feeling. Q2: Can I still have a successful career with Muscular Dystrophy? Yes. With the right support, adaptive tech, and mindset, many people—including myself—build fulfilling careers despite physical limitations. Q3: How can I help a friend or family member cope emotionally with MD? Be there. Listen without judgment. Celebrate small wins with them and encourage open conversations about their mental state. If this article touched you, please share it. For more real-life insights and support, visit AdaptiveLifeGuide.com.

By Anshuli Singhal Table of Contents Introduction Daily Mobility Support at Home Wheelchair Use: Only When Needed Bathroom Modifications: A Small Change, Big Relief Avoiding Stairs: A Smart Home Adaptation Getting In and Out of Vehicles Two-Wheeler Seating: Small Freedoms Matter Emotional Strength Through Family Support Final Thoughts FAQs Introduction Living with Muscular Dystrophy (MD) comes with unique physical challenges, but what has made my journey manageable—and even fulfilling—is the unwavering support of my family. I’m Anshuli Singhal, and I’ve lived with muscular dystrophy for over 15 years. While I may not use a wheelchair at home, I rely heavily on my loved ones for day-to-day activities that most people take for granted. This article is not just my story but a guide for families supporting someone with MD. Daily Mobility Support at Home One of the most crucial aspects of living with MD is mobility assistance, especially when getting in and out of bed. My family members have become my caregivers, gently helping me rise every morning. I can walk slowly indoors, but if I fall, I can’t get up on my own. It’s my family who lift me up, support me on my legs, and help me regain balance. Their help isn’t just physical—it’s emotional strength that pushes me forward. Wheelchair Use: Only When Needed Unlike many others, I don’t rely on a wheelchair inside the home. I move around slowly with caution, holding onto walls or furniture when needed. However, during outdoor travel or long distances, I use a wheelchair. This allows me to participate in family outings or doctor visits comfortably. My family ensures the wheelchair is always ready when we step out. Bathroom Modifications: A Small Change, Big Relief A standard bathroom can be incredibly difficult to use with muscular dystrophy. That’s why my family installed a commode setup tailored to my needs. These kinds of home modifications may seem minor, but they bring immense independence and dignity. Whether it’s grab bars, elevated toilet seats, or a more accessible layout, such adjustments make life significantly easier. Avoiding Stairs: A Smart Home Adaptation One of my greatest challenges is climbing stairs. It’s nearly impossible for me now, so my family made sure our home has no stairs at the entrance. This single decision has helped reduce the risk of falls and given me safer access to the house. If you’re designing or remodeling a home for someone with MD, a stair-free entry is a must-have feature. Getting In and Out of Vehicles Getting in or out of a car might look simple, but for me, it’s a task that requires careful support. My family helps me stand from the car seat and gently assists me in gaining balance before I walk. These are small acts of love, but they carry tremendous importance for someone with limited mobility. They ensure I can attend functions, family gatherings, or even just go out for a drive. Two-Wheeler Seating: Small Freedoms Matter One might think someone with muscular dystrophy would avoid two-wheelers completely—but not me. I can still sit comfortably on a two-wheeler with help of my family to lift my legs to keep on two wheeler foot pegs , which gives me a sense of freedom and normalcy. With someone driving and taking safety precautions, this small action becomes a big mental boost. Emotional Strength Through Family Support Beyond physical help, emotional support from family is my biggest pillar. Their constant presence gives me confidence to face the uncertainties of this condition. Whether it’s a comforting word, a hand to hold, or just sitting with me when I’m tired—every act of care builds my inner strength. Final Thoughts Family support in muscular dystrophy is not just about lifting, helping, or driving—it’s about sharing the burden of a disease that can be isolating without compassion. My journey has been smoother because my family walks beside me every step of the way. If you’re a caregiver or a loved one, know that your presence matters more than you realize. FAQs Q1. Can someone with muscular dystrophy live without a wheelchair?Yes, some people like me don’t use a wheelchair at home and move around slowly. However, wheelchairs can be essential for long distances or travel. Q2. What are essential home modifications for someone with MD?Installing grab bars, a commode suited to the individual, and avoiding stairs at entry points are some helpful changes. Q3. Is emotional support as important as physical help?Absolutely. Emotional encouragement can greatly improve confidence, mood, and overall quality of life. Q4. Can someone with MD sit on a two-wheeler?Yes, depending on the severity of their condition. I personally can sit on a two-wheeler with some help if someone else drives it. Q5. How can family help during a fall?If a person falls and can’t get up on their own, family members should be trained on how to lift safely without causing injury. If you found this article helpful, please share it to spread awareness. Together, we can build a more supportive world for people living with muscular dystrophy.