Living Beyond the Diagnosis

Living with Multiple System Atrophy (MSA) isn’t just a personal journey; it’s a shared one. My friends and family have been by my side, offering unwavering support through the ups and downs, but so many of my fellow sufferers have expressed such emotional pain over the absence of this show of support in their lives, I felt compelled to write this post.

There’s something about MSA that has made this journey more challenging for them—accepting the uncomfortable truth that MSA is terminal and incurable.

The Unspoken Fear of Mortality: I’ve come to understand that our loved ones’ hesitation may not be rooted in a lack of care or empathy but rather in the profound fear of their own mortality. It’s not easy for anyone to face the reality that life is fragile and unpredictable, and MSA serves as a stark reminder of this fact.

The Avoidance Reflex: As the condition progresses and the symptoms become more visible, some friends and family members start to pull away. It’s not because they care any less; it’s because seeing their loved one struggle with the effects of MSA forces them to confront their own mortality. It’s a tough pill to swallow, and many people instinctively avoid situations that make them uncomfortable or remind them of their vulnerability.

The Value of Empathy and Understanding: I want to emphasize that I understand this complex emotional terrain. But here’s the thing: MSA patients need our friends and family more than ever. Our friendships are not defined by our conditions, but rather by the shared experiences, laughter, and memories we’ve created together. These bonds are incredibly valuable, and they become even more precious as MSA progresses.

Embrace, Don’t Retreat: To all friends and family, I want to say this: we understand that it’s not easy. But please know that we don’t want you to retreat. We want you to embrace us, just as you always have. While MSA is a part of our life, it doesn’t define who we are, and it shouldn’t redefine our relationship.

What We Can Do Together: Together, we can navigate the challenges and uncertainties that MSA brings. We can share moments of laughter, create new memories, and cherish the time we have. Your presence, understanding, and willingness to be there for us means the world.

Conclusion: Living with MSA has taught me many things, including the value of empathy and the importance of understanding the emotional journey our loved ones are on. Let’s face this uncomfortable truth together, supporting each other through the fear and uncertainty, and treasuring the time we have. Together, we can find strength, resilience, and love in the face of adversity.

Pick up the phone, send that text, connect on Facebook. Reach out to that person who needs you most right now and show them, even though they face a difficult reality, you will always be there if they just want to talk to a friend ❤ 😊

Look for an upcoming 4 part series on “caretakers” and their importance in this fight.

~Coach~