The Children's Tumor Foundation
11/10/2025 | Press release | Distributed by Public on 11/10/2025 11:45
Bridging the Gap: Talking About NF with Uninformed Relatives
Bridging the Gap: Talking About NF with Uninformed Relatives
November 10, 2025Featured, NF1, NF2-SWN, SWN
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Family gatherings during the holiday season can be a source of love and laughter, but they can also bring tough conversations. Whether you're a parent advocating for your child with NF, or an adult living with NF yourself, it can be frustrating when relatives make comments that miss the mark. Maybe someone insists you "look fine," or an aunt offers unsolicited advice from something she read online.
It's not that they don't care. It's that they don't understand. They may mean well but simply lack the right words or information-and that's something you can gently help change. And while that can be exhausting, there are ways to turn those moments into opportunities for empathy and connection.
Here are some ways to navigate difficult conversations with uninformed relatives this season, without losing your peace.
Why These Conversations Feel So Hard
NF can be complex to explain, particularly for thoseTwo women sit indoors having a conversation. One woman with curly hair wears a yellow top, while the other, with straight hair, wears a white shirt. A plant is visible in the background. unfamiliar with it. For many families, the challenge isn't just the medical side-it's the emotional side.
Invisible symptoms: Some people with NF don't "look" sick, so relatives may assume everything is fine.
Misinformation: Some might confuse NF with other conditions, or believe myths they've heard online.
Emotional weight: Parents may feel protective of their child's privacy, while adults living with NF may feel pressure to educate or justify their experience.
Family dynamics: Generational differences, unhelpful comparisons, or "tough love" attitudes can make meaningful conversations even harder.
Recognizing these patterns doesn't make them easier-but it does help you prepare for them.
Preparing for the Conversation
A little planning can make a big difference. Before heading into a family gathering, take a moment to ground yourself and set realistic expectations.
1. Clarify your purpose.
Ask yourself what you hope to get out of the conversation. Do you want to educate, build understanding, or simply share how NF affects your or your child'sA young boy and a woman sit close together on wooden steps, talking and smiling at each other. The boy holds sunglasses and wears a black "Istanbul" t-shirt. daily life?
2. Choose your timing.
Family dinners or big gatherings might not be the best place for deeper discussions. Opt for quieter moments, like a walk or a one-on-one chat.
3. Plan your talking points.
Prepare one or two short explanations in advance-something simple, clear, and true to your experience.
For parents: "Our child has NF, which means we go to regular checkups to make sure everything's on track. It can be unpredictable, but we focus on what we can manage."
For adults: "I live with NF, which affects my body in ways you might not see. Some days are easier than others, but it's something I manage every day."
4. Use analogies or relatable examples.
For instance: "NF causes growths on nerves. It's like having small, unexpected roadblocks that we keep an eye on." Simple comparisons can make medical terms more approachable.
Explaining NF in a Way That Sticks
You don't have to share every detail. The goal is toThree people stand and talk in a modern kitchen with large windows, natural light, and cookies on the counter. build understanding rather than to give a medical lecture.
Keep it brief. Stick to what feels relevant for the situation.
Make it personal. Stories connect better than statistics.
Speak from your experience. Use "I" or "we" statements. "We handle a lot of doctor visits," or "I deal with symptoms that come and go."
Offer a resource. If they seem genuinely interested, point them to CTF.org so they can learn more in their own time.
Handling Common Scenarios
Here are a few examples of how to respond when conversations get tricky:
When someone says, "But you look fine!"
"Thanks! I do my best, but a lot of what I deal with isn't visible. NF affects more than what you can see."
When someone offers unsolicited advice:
"I appreciate that you care. We're already working closely with doctors who specialize in NF."
When someone asks something too personal:
"That's not something we like to talk about in detail, but thanks for understanding."
When misinformation comes up:
"That's a common misconception. NF actually affects everyone differently. There's a great overview on the Children's Tumor Foundation website if you'd like to learn more."
These simple, calm responses keep the tone positive while protecting your boundaries.
Protecting Your Peace
It's okay to step away from a conversation, or skip it entirely, if it starts to feel draining.
Know when to disengage. Not every comment deserves a response.
Lean on allies. Let a supportive relative or friend help redirect the topic if things get tense.
Model calm confidence. For parents, this helps children learn how to advocate for themselves in the future. For adults, it sets the tone that your boundaries are valid and firm.
Recover afterward. Take time for self-care: a quiet moment, a short walk, or connecting with someone who understands what NF life is really like.
Remember-you're not obligated to educate everyone. Sometimes, protecting your peace is advocacy.
Finding Understanding, One Conversation at a Time
A group of people sit around a dining table with food and drinks, conversing and holding glasses during a meal in a warmly lit room.Whether you're advocating for your child or for yourself, these conversations take courage. Each time you speak up, even in small ways, you help others understand NF a little better.
The more your loved ones understand, the more you can focus on what really matters-enjoying time together..
When you're ready, share CTF's educational resources or stories to keep the conversation going. Together, we can help bridge the gap
Resources
Understanding NF - A clear, accessible overview of neurofibromatosis, its different types, and how it affects individuals and families in unique ways.
What Is Neurofibromatosis Type 1 (NF1) - A detailed look at the characteristics of NF1 to help relatives and friends better understand what daily life might look like
What is NF2-Related Schwannomatosis (NF2-SWN) - A detailed look at the characteristics of NF2-SWN to help relatives and friends better understand what daily life might look like.
What is Schwannomatosis (SWN) - A detailed look at the characteristics of SWN to help relatives and friends better understand what daily life might look like.
Mental Health and Resiliency Webinar - A recent session focused on emotional wellness, coping strategies, and building resilience within the NF community.
Resource Center - A hub for fact sheets, brochures, videos, and educational tools designed to help individuals and families explain NF and raise awareness in their communities.
The Children's Tumor Foundation published this content on November 10, 2025, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on November 10, 2025 at 17:45 UTC. If you believe the information included in the content is inaccurate or outdated and requires editing or removal, please contact us at [email protected]