Advocacy, Social Media, and Letting Go: When Your Child Can Read What You Share

For many families in the rare disease community, social media has become a powerful advocacy tool. It helps raise awareness, connect with other families, influence research, and push for change. For years, parents and caregivers have been the voices telling these stories — often long before their children were able to understand them.

But what happens when your affected child grows up and starts using social media themselves?

This moment can bring pride, uncertainty, and sometimes discomfort. Advocacy that once felt necessary and protective may suddenly feel complicated.

When advocacy meets independence

As children grow into teenagers and young adults, they begin to shape their own identities — online as well as offline. They may read posts written years earlier, see photos shared with good intentions, or come across deeply personal stories told during moments of crisis.

For parents, this can trigger difficult questions:

• Did I share too much?

• Would my child have wanted this story told this way?

• How do I balance advocacy with their right to privacy?

  
  
  
  

There is no single correct answer — and many families are navigating this in real time.

Shifting from speaking for to speaking with

One of the biggest transitions in advocacy is moving from being your child’s voice to becoming their ally. Where possible, involving your child in decisions about what is shared can be empowering. Some young people want their story to be visible; others prefer clear boundaries. Both are valid.

Simple steps can help:

• Asking permission before posting

• Talking openly about older content

• Agreeing together on what feels OK to share publicly

• Respecting a “no”, even when advocacy feels urgent

This shift can be emotional, but it also reflects growth, trust, and respect.

The permanence of the digital world

Social media does not forget. Posts shared years ago can resurface unexpectedly, sometimes outside the supportive rare disease community.

That doesn’t mean families were wrong to share — advocacy has driven enormous progress. But it does mean it’s worth pausing to reflect on how earlier posts might be perceived by a young person today, or by their peers.

Some families choose to archive older content, anonymise posts, or change how they share going forward. Others leave content online but add new context. All of these choices are valid.

Advocacy is allowed to evolve

Advocacy does not have to look the same forever. What worked when your child was five may not work when they are fifteen.

You may move from personal storytelling to broader awareness, education, or policy-focused

advocacy. You may choose quieter forms of involvement. You may step back — or your child may step forward themselves.

None of this means you’ve failed the cause. It means you’re adapting to a new chapter.

Holding space for mixed emotions

It’s normal to feel conflicted. Advocacy often comes from love, urgency, and fear — and letting go of control can be hard. It’s also normal for young people to have mixed feelings about their diagnosis, visibility, and online presence.

What matters most is keeping communication open, leading with empathy, and remembering that both advocacy and privacy can coexist.

A shared journey

At its heart, rare disease advocacy is about dignity, respect, and improving lives. As our children grow, those values remain — even if the way we express them changes.

Listening, adapting, and walking alongside our children as they find their own voice may be one of the most powerful forms of advocacy there is.