01Know why you are sharing
Choose one main purpose: helping someone feel less alone, explaining an NF challenge, raising awareness, supporting advocacy, or inviting action.
Ask yourself: What do I want someone to understand, feel, or do after hearing this?
02Choose the right part of the story
You do not need to tell your entire medical history. One specific moment, decision, barrier, relationship, or lesson is often easier to follow and remember.
Try: What happened? Why did it matter? What changed or still needs to change?
03Give your story a simple shape
Use this structure when it helps your audience follow the experience and understand what you hope comes next.
MomentWhat happened?
→MeaningWhy did it matter?
→Next stepWhat do you hope follows?
Give the audience enough context
Explain unfamiliar NF terms briefly, then return to the human experience. Describe how the issue affected daily life instead of relying only on a diagnosis or test result.
Remember: Your experience is valid, but it does not need to represent every person with NF.
05Set boundaries before you share
Decide what is private, what may be shared only with permission, and whether you want your name, image, location, employer, providers, or family details included.
Pause before posting: Would I be comfortable if this were saved, quoted, or seen by someone I did not expect?
06Do a privacy and accuracy check
- Have I protected other people's privacy and requested consent when appropriate?
- Do I understand where this may be published and who may be able to see it?
- Am I comfortable with it being saved, quoted, or reshared?
- Have I verified any medical, research, or statistical claims?
07When your story supports a request
Connect the personal experience to one clear purpose. Explain what happened, why it matters, and what you want the audience to understand or do.
- Use only the dates, barriers, daily-life effects, or outcomes that support your point.
- Separate your lived experience from general medical or research claims.
- End with one specific response, decision, correction, resource, or next step.
Try: “Because [experience or barrier] affected [part of life], I am asking for [specific action].”
08Keep the follow-up connected
Save enough information to continue the conversation without retelling the entire story each time.
- Record who received the story or request and when it was sent.
- Write down the promised response, responsible person, and expected date.
- Note what happened next and what remains unresolved.
Follow up: “On [date], I shared [concern or request]. The next step was [action] by [date]. Who is responsible, and when should I expect confirmation?”
