If your brother or sister has a primary or secondary immunodeficiency, your life may look a bit different from that of your friends. Perhaps you have to help out at home more than others your age. Perhaps you feel worried a lot of the time. Maybe you have to watch your brother or sister in pain or having medical procedures. 

At times, your parents’ attention may be more focused on your affected brother or sister. Sometimes, it can feel like no one understands what it’s like to be you. 

You’re not alone – your feelings matter.  

This article covers some of the emotions you may experience and suggests sources of support if you’re struggling to cope.   

Carrying a quiet and heavy load

Siblings of individuals with immunodeficiency can carry a quiet and heavy load, occasionally becoming a young carer who provides help daily. Such a responsibility can feel like a lot to cope with and may affect your education if you’re often tired or miss lessons. 

Siblings often show deep empathy, resilience and loyalty but, sometimes, this can come at the cost of your own mental health, education and social life. 

You deserve support, too

Whether you’re age 8 or 18, your voice matters. You may need space to talk, to be seen or to be yourself.  

You deserve:

  • Recognition for what you do and how you feel 
  • Space to talk about your hopes, fears and the future 
  • Opportunities to be “just a kid” again 
  • Support from people who truly understand. 

Positives you might notice

While being a sibling of someone with immunodeficiency may be challenging, it can also build your character in positive ways.

Strengths you may gain

  • Resilience – growing up in a family where health is a priority can make you able to withstand tricky situations and adaptable. 
  • Compassion – many siblings develop a deep sense of empathy for others. 
  • Problem-solving skills – you often learn how to handle unexpected situations and think quickly or follow your instinct. 
  • Maturity – you may gain independence and emotional intelligence earlier than your peers. 
  • Advocacy skills – you learn how to speak up for your sibling and for yourself, which can be a powerful life skill. 

Positive connections

  • Strong family bonds – facing challenges together can bring you closer to your parents and siblings. 
  • Shared joy – celebrating your sibling’s milestones can feel extra meaningful. 
  • Friendships – you might connect deeply with friends who understand your situation or with other siblings in similar families. 

Looking ahead

As you get older, it’s common to start thinking about the future: what could be in store for your brother or sister – and you. At key milestones in your life, such as choosing your options, applying to university or starting work, it’s OK to think about how your family situation fits into that. And it’s OK to ask for help. 

Help and resources available

There are organisations and resources available that offer tailored support. They understand your unique experience as a sibling of someone with a rare condition. 

Support and advice:

  • Sibs – UK charity supporting siblings of disabled children and adults 
  • Contact – Practical tips for supporting siblings in families with disabled children 
  • Unique – A guide for siblings of children with rare genetic conditions 

Emotional and peer support:

  • Carers Trust – Support for young and young adult carers 
  • Sense – Activities and tailored support for young carers and siblings 

 Posted September 2025