Dear MS: 5 questions people are afraid to ask—here are my answers.

Living with multiple sclerosis (MS) is often a journey filled with hidden challenges, both for those who have it and for those who don’t. The symptoms can be invisible, making it hard to discuss the hurdles I face daily. Yet, I believe that open communication is vital for understanding this complex condition. Here are the top five questions people are hesitant to ask me about my MS symptoms and challenges, along with my honest answers.

1. What are the symptoms you experience daily?

A common misconception about MS is that it’s a uniform illness experienced in the same way by everyone. In reality, it varies greatly from person to person, and my symptoms fluctuate daily. One of the most persistent challenges I face is fatigue. This fatigue is not simply tiredness; it is an overwhelming drain that can make even the smallest tasks feel insurmountable. Studies indicate that up to 75% of people with MS report experiencing significant fatigue, impacting their ability to work or engage socially.

In addition to fatigue, I often encounter cognitive difficulties, often referred to as "MS fog." Tasks that once seemed trivial, like simple math or remembering where I placed my keys, can suddenly become monumental challenges. Numbness, weakness or tingling in my limbs is another common symptom; on my bad days, walking can feel like a tightrope act, and that is when I'm grateful for my cane.

2. How do you manage your symptoms?

Managing my symptoms requires a comprehensive strategy. I am always learning what works best for me. Regular exercise, such as 30 minutes of yoga or an easy bike ride several times a week, helps keep my body and mind active. For my sanity, I hit the mats for Brazilian Jiu-Jitsu class, doing what I can and stopping when I need to.

Listening to my body is crucial. If I need extra rest, I take it. Mindfulness and meditation have also proven to be powerful tools against stress and anxiety. These practices not only improve my focus but also provide emotional relief, helping me navigate the challenges that MS presents.

3. Has your social life changed since your diagnosis?

Yes, my social life has changed significantly since my diagnosis. Living with MS can strain social interactions. I often feel guilty when I cancel plans or cannot keep up with friends, which can lead to feelings of isolation. Surrounding myself with understanding and accepting friends has become essential.

Adapting my social life to match my energy levels has been a game-changer. Rather than late-night outings, I prefer low-key gatherings that allow me to socialize without overexerting myself. Virtual hangouts have also become a lifesaver, enabling me to stay connected with loved ones while managing my energy effectively.

4. What do you wish people understood better about MS?

People need to understand that MS is not merely a physical illness but a holistic experience that affects my mental health too. Many individuals assume that if I look fine, then I must feel fine. However, many symptoms are not visible. The fatigue, pain, and cognitive challenges I face daily prove just as difficult as any visible disorder.

Moreover, I wish people felt comfortable asking questions rather than tiptoeing around the issue. Having an open dialogue leads to better understanding and support, making my journey manageable. I genuinely appreciate when friends inquire about my experiences rather than make assumptions.

5. How can friends and family best support you?

Support can manifest in various ways. Sometimes, having a friend who simply listens to my frustrations without trying to fix things can be incredibly comforting. Other times, practical help, such as running errands or participating in low-key activities with me, can make a big difference.

It truly helps when friends educate themselves about MS. This knowledge can dispel myths and build empathy. Open communication is crucial, so don't hesitate to check in or ask how I’m feeling. Lastly, patience is essential. I might need extra time to recover from fatigue or process events, and that's perfectly acceptable.

Final Thoughts on MS

Navigating life with multiple sclerosis is an unpredictable journey that can feel daunting. However, sharing my experiences helps bridge the gap of understanding and fosters connections. If you have questions about someone’s struggles, I encourage you to speak up. Your curiosity can strengthen relationships and provide much-needed support.

By breaking down the barriers surrounding MS, we can create a more inclusive environment for everyone affected by this condition. Let’s keep the conversation going. Remember, being open about our experiences helps make the world a little less intimidating for those living with chronic illnesses.

Much love,

E.P.