top of page

Living Fully with Lynch Syndrome

Updated: Sep 18

Living Fully with Lynch Syndrome

Life has a way of throwing unexpected challenges our way. For me—and many others—one of those challenges has been living with Lynch syndrome, a genetic condition that increases the risk of developing certain cancers.


Every time I mention this diagnosis to a healthcare professional, I’m met with a look that suggests illness, even though I’m not sick. So , it’s easy to see how some people might view Lynch syndrome as a dark cloud, looming over their future. But for me, it’s become something else entirely. It’s not just about medical check-ups or tests—it’s about the mental and emotional shifts that come with knowing time is precious and that every choice we make matters.


This article is about my journey. But if you’re living with Lynch syndrome—or any life-changing diagnosis—I hope this helps you navigate some of the questions you've asked yourself along the way. From fear of the unknown to redefining self-worth, I’ve learned to turn what feels like a burden into a source of strength. And I want to share that with you.


A Moment of Clarity


It's estimated that only about 1% of people who actually have Lynch syndrome are diagnosed in their lifetime. Some might argue that it’s better not to know, but for me, the diagnosis has given me the gift of perspective. It forces me to reflect periodically on what really matters, to ask myself how I’m spending my time and who I’m spending it with. It pushes me to live with intention and purpose, shaping me in ways I never expected.


If you’re living with Lynch syndrome, you know the drill: every six months to a year, you go through a round of tests. Waiting for those results is always intense, and when they come back clear, the relief is overwhelming. But it's not just relief—it’s gratitude. Gratitude for the extra time we’re given to live well, not just longer.


These moments prompt me to think beyond just my physical health. Yes, having access to preventive care is a blessing, but living with Lynch syndrome isn’t just about regular check-ups, preventitive surgery, or a clean bill of health. It’s about the choices we make every day. It’s about managing stress, looking after our emotional well-being, and staying true to ourselves in the face of life’s challenges.


At the end of the day, it’s not about how long we live; it’s about how well we live. Lynch syndrome heightens my awareness of life’s fragility, but it also reminds me that I get to decide how I spend my time, and whether I’m truly fulfilled.


Finding Strength in Vulnerability


Living with this syndrome has had a profound impact on how I see myself. Every test cycle reminds me of my body’s vulnerabilities, and I’d be lying if I said that wasn’t tough. It’s natural to feel anxious before each test, wondering if this time will be different. I’ve found that living with this constant possibility of illness requires a balance between vigilance and emotional resilience.


For women, particularly, studies have shown that Lynch syndrome can have a deeper impact on self-esteem. The pressure to juggle family, career, and our own health can be overwhelming. Add to that the memories of close relatives who have faced cancer, and the emotional toll becomes even heavier. But what I’ve realized is this: vulnerability isn’t a weakness. It’s a source of strength.

If you’re reading this and facing your own journey with Lynch syndrome—or another life-altering condition—know that you’re not alone. The questions you're asking yourself about self-worth, relationships, or the fear of what the future holds are normal. You’ll find your way through them too.

It’s been five years since my Lynch diagnosis, and in that time, I’ve had to confront some hard truths about myself. Despite my efforts to take back control of my life, I’ve still managed to take a back seat to others — being someone’s Plan B, their contingency plan, or the convenient option always there to fill the gaps while they wait for something better.


Yet, valuing myself in relationships isn’t always easy. There’s a constant push-and-pull between the desire to be loved and the fear of potentially having to face that final battle alone. It’s a balancing act. The desire to demand more for myself often clashes with the fear of being abandoned. That fear sometimes makes me second-guess my worth and choices, especially when the fear of deception or being hurt is added into the mix. But this recent clean bill of health has been a turning point pushing me to clear out relationships that no longer serve me—Marie Kondo-style.

If you’ve felt the same fear—whether it’s about being alone or not feeling enough—remember this: vulnerability doesn’t make you weaker. It makes you real, and it makes you strong. This journey has taught me that whilst vulnerability can feel exposing, it’s also what makes us resilient. It’s allowed me to prioritize my emotional health, let go of relationships that don’t honor my worth, and recognize that being alone doesn’t mean being unloved.


A Gift, Not a Burden


Many people might see Lynch syndrome as a life sentence, a ticking time bomb waiting to go off. But I’ve chosen to see it differently—as a gift. It’s a constant reminder to live fully in the present and to find purpose in everything I do. Yes, it involves regular screenings and preventive care. But it’s also about living a life that reflects my value, not just reacting to what might happen in the future.


Moving Forward with Purpose


Lynch syndrome may influence parts of my future, but it has also given me the clarity to prioritize what truly matters. It reminds me that life is fragile, but instead of fearing that fragility, I use it as a motivation to live more fully.


I’m learning to value my time, take care of my well-being, and choose relationships that nourish me. Life is short, but it’s also full of possibility—and going forward, I’m embracing that with self-love, confidence, and purpose.

Comments


bottom of page