Living Beyond the Diagnosis

Living with Multiple System Atrophy (MSA) can be an isolating experience. It’s not just the physical symptoms that challenge your daily life, but the emotional and social aspects as well. One of the most significant hurdles you encounter is the hesitation friends and former coworkers have in reaching out to you. It’s something I’ve thought about extensively, and I want to share my perspective on why this happens and how we can navigate it together.

First and foremost, it’s essential to recognize that it’s okay to feel uncomfortable when someone you care about is battling a life-limiting illness. MSA, like other neurodegenerative diseases, is a heavy subject to broach. It forces us to confront our own mortality and the fragility of life. The fear of saying the wrong thing, of not knowing how to respond, or simply feeling helpless can paralyze well-intentioned friends and colleagues.

So, what can you do if you’re hesitant to get in touch with a friend or former coworker dealing with MSA, or any terminal disease really? The key is to remember that your effort to reach out matters more than the words you choose. Sometimes, just a simple “hello” can make a world of difference. Start with something light, something that’s on your mind, perhaps in our case, related to our shared experiences in the real estate tech industry.

For instance, you might say, “Hey, I saw this fascinating new tech tool in the real estate industry. It made me think of the good times we had working together. How are you doing these days?” This approach allows you to establish a connection based on shared interests and experiences, making the transition into discussing the illness more comfortable.

The truth is, we don’t expect you to have all the answers or to magically make everything better. What matters most is that you’re willing to be there, to lend an empathetic ear when we need to talk about our struggles, and to share a laugh when we’re up for it. Your presence and willingness to engage in meaningful conversation mean more to us than you can imagine.

Additionally, if you’re unsure about how to approach the topic of our illness, don’t be afraid to ask questions. Ask us how we’re feeling, what our day-to-day life is like, or if there’s anything specific you can do to support us. By showing that you care enough to inquire, you’re demonstrating genuine concern and opening the door for more profound conversations.

Remember, MSA may be a significant part of our life, but it doesn’t define us entirely. We’re still the same person you knew before the diagnosis, with interests, passions, and dreams beyond the confines of this disease. So, let’s connect over shared hobbies, current events, or anything else that sparks our interest. In doing so, we can build a bridge that leads to more comfortable discussions about health.

In conclusion, it’s entirely natural to feel uneasy when approaching the subject of a life-altering illness like Multiple System Atrophy. But please know that your efforts to reach out, no matter how small they may seem, can provide immense comfort and support. Start with what’s on your mind, and together, we can navigate this challenging journey with empathy, understanding, and shared moments of connection.