Thriving Through the Storm:
Navigating Menopause While Living with Neurofibromatosis
Living with Neurofibromatosis (NF) has taught me that life rarely follows a straight path. Every stage of life brings new challenges, and just when I think I've learned how to manage one set of symptoms, another chapter begins. For me, that chapter has been menopause.
Many people understand menopause as a natural part of aging, but when you also live with NF, the experience can feel far more complicated. Hormonal changes can seem to magnify symptoms that were already difficult to manage. Some days, it's hard to tell where menopause ends and NF begins.
Fatigue has become one of my biggest struggles. The exhaustion isn't simply feeling tired after a long day—it's a deep, overwhelming fatigue that can make even simple tasks feel impossible. Add in sleepless nights, brain fog, and unpredictable emotions, and it can sometimes feel like my body is working against me. *I have yet to experience "hot flashes...but I do feel like sometimes I would be happy sleeping on a bed of ice cubes- While Rich is huddled in blankets.
Then there is the pain. Living with NF often means dealing with chronic discomfort, nerve pain, and tumors that can affect daily life. Menopause has added another layer, bringing joint aches, muscle stiffness, and changes that make my body feel unfamiliar. There are days when I wonder if I'll ever feel like myself again. I'm lost in a menopause/NF fog.
One of the hardest parts has been the uncertainty. Research on how menopause affects women with Neurofibromatosis is still limited. There aren't many roadmaps to follow or answers that clearly explain what to expect. That uncertainty can be frustrating and, at times, isolating. My tumors are multiplying - Can I stop this? Or am I just doomed to accept it?
Despite these challenges, I refuse to let either menopause or NF define who I am.
Thriving doesn't mean pretending everything is easy. It doesn't mean ignoring the difficult days or forcing a smile when I'm struggling. Thriving means continuing to move forward, even when the path is difficult. It means learning to listen to my body instead of fighting against it. It means celebrating small victories that others may never notice.
I've learned that rest is productive. Asking for help is not weakness. Advocating for myself with healthcare providers is essential. Most importantly, I've learned that my worth isn't measured by how much I accomplish on my hardest days.
The NF community has also reminded me that I am never alone. Connecting with others who understand the daily realities of this condition has given me strength during seasons when I needed it most. Sharing experiences, encouraging one another, and celebrating every success—big or small—creates a sense of hope that no diagnosis can take away.
Menopause has certainly tested me. Neurofibromatosis continues to challenge me. Together, they have pushed me physically, emotionally, and mentally in ways I never expected. But they have also revealed a resilience I didn't know I possessed.
Every day I choose hope over fear.
I choose to keep learning about my health, to advocate for better awareness and research, and to support others walking a similar path. I choose to focus on what my body can still do instead of dwelling only on what has changed.
If you are living with both menopause and Neurofibromatosis, know that your struggles are real. Your exhaustion is real. Your frustration is valid. But so is your strength.
Our stories are not defined solely by symptoms or diagnoses. They are defined by our perseverance, our courage, and our determination to keep living fully despite the obstacles.
I am still learning, still adapting, and still finding my way through this season of life. Some days are undeniably harder than others, but every day I wake up determined to keep THRIVING with NF.
Because Neurofibromatosis may be part of my story—but it will never be the whole story.
Thrive On!
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