Self-Identity & CF

Self-identity includes your values, beliefs, strengths, interests, roles, goals, personality traits, and the experiences that have shaped you over time. It is not about what others think of you, it’s about how you think about who you are. It’s also dynamic; it can change and evolve as your life, health, relationships, and circumstances change.

Living with a long-term condition like CF can influence self-identity in complex ways. Health experiences, routines, time in hospital, school or work absences, and interactions with healthcare systems can all become woven into how someone understands themselves. At the same time, identity is made up of many parts, not just health.

People may be shifting what CF is, how big a part of their identity it is, and what it means to live with CF.

– CF Health Professional

With new treatments, health and independence are shifting in ways that can bring relief but also unexpected challenges. Many people on modulators experience an emotional adjustment period, a time of re-evaluating who they are and what they want now that day-to-day health management isn’t the only focus and health challenges may look different.

You may have:

Identified as “the sick kid” or someone who felt different
Developed maturity, resilience, or responsibility early from managing complex care
Found comfort in the structure and predictability of CF routines
Felt left out socially or emotionally, or like you had to catch up
Experienced extra attention, care, or support growing up, which may have influenced your sense of independence or identity

My treatment and CF diagnosis are part of who I am.

– Adult with CF

It’s okay to acknowledge how CF has shaped you, both the hard parts and the strengths. Understanding your experiences, values, and personal qualities can help you feel more grounded during times of change.

Living with CF may have brought challenges and taken certain things from you, and it may also have given you perspectives, skills, or relationships that are deeply meaningful. As your body adjusts to new treatments and your health improves, it’s expected that your sense of identity may shift as well.

Reflecting on who you are beyond CF, your symptoms, or your medical routines can help you build an identity that feels more balanced, one where CF is part of your life story, but not the part that defines all of you.

We keep our daughter’s CF quite private. Most friends or family do not know what is involved in her daily care.

– Parents of a child with CF

Some suggestions:

Reflect on strengths you’ve developed (e.g., resilience, empathy, responsibility) through your CF journey. This can help you appreciate how CF shaped you without defining you.
Try identity mapping: make a visual or written list of all the parts that make you who you are (student, friend, musician, pet lover, etc.) beyond CF.
Connect with peers who also grew up with CF: online peer support groups or mentoring programs can help you feel less alone in navigating your past and present identity.
Take time to reflect on what brings you joy, and what your hopes, goals, and aspirations are. Allow yourself space to explore what you like and don’t like, and to enjoy getting to know yourself more deeply. Trying new things can be part of this process too. It can also help to talk with people who know and care about you and ask what they see as your strengths or when you seem most like yourself. Sometimes others can help us notice parts of who we are that we might overlook.

We didn’t tell anybody about my child’s diagnosis when she was first born. Mainly because I didn’t want her to be “my child with CF”. We just wanted her to be her own person, regardless of what she had going on in her life. It wasn’t that I was embarrassed or ashamed. I just didn’t know how to manage it. I didn’t know how to say to people she has this life limiting condition because I didn’t see her like that. I just saw my beautiful little baby who had this condition. So, we just chose not to, because I just didn’t want her to be labelled with an illness. We just wanted her to be herself.

– Parent of a child with CF

Adapting to Changes in Health, Identity & Confidence

New treatments and improved health can be life-changing, but they can also feel disorienting. If you’ve spent much of your life managing illness, it’s understandable to feel uncertain, conflicted, or even guilty when your experience begins to look different, from your past self or from others in the CF community.

For some people, reaching milestones such as reducing treatments, spending less time in hospital, or stopping medications they’ve taken since childhood brings a huge sense of relief. For others, these changes can come with a surprising sense of loss or grief. Medical routines, clinic visits, and treatment schedules may have provided structure, identity, or a sense of safety. Letting go of them doesn’t mean you want to go back, it reflects that change, even positive change, still takes time to settle into.

It’s important to remember that these emotions aren’t mutually exclusive. You can feel grateful and relieved while also feeling confused, guilty, or unsettled at the same time.

You might notice:

Feeling a loss of identity or purpose now that CF feels less central
Worrying that others expect you to act as though you’re “cured”
Experiencing survivor’s guilt if peers are not doing as well
Missing the familiarity of medical routines or regular clinic visits
Feeling unsettled without the structure CF care once provided
Feeling pressure to be grateful, even while still living with CF
Feeling guilt or frustration about decisions made based on earlier health expectations (e.g. relationships, career, or health management)
Feeling uncertain about what comes next or how to plan for the future

As your health changes, so might your energy levels, physical abilities, independence, and sense of self. For some, this brings renewed confidence and possibility. For others, it raises questions about where you fit now and how to express yourself in new spaces. It’s completely normal to feel a mix of pride, excitement, doubt, and uncertainty.

Confidence doesn’t mean always feeling sure. It grows gradually, through learning to trust yourself and your body as you navigate change.

I personally believe talking about these issues with other people with CF helps you realise you are not alone. It has helped me along the way.

– Adult with CF

You might feel:

More confident in your independence or new energy
Unsure how to present yourself in relationships, work, or study
Disconnected from people who don’t understand the CF experience

What might help:

Give yourself time and permission

Identity change takes time. Feeling uncertain or “in between” is a normal part of growth. Journaling or talking things through can help process the transition.

Explore who you are beyond CF

Try new hobbies, classes, volunteer roles, or creative outlets to discover interests and strengths outside of health.
Set small personal goals unrelated to CF (e.g. reading a book, planning a trip, learning a new skill).

Create new grounding routines

Non-medical routines such as a morning walk, meditation, creative time, or regular social catchups can offer stability and comfort.

Build confidence gradually

Start small: speak up once in a group, try something new, wear something that feels authentically you.
Notice moments where you downplay yourself or your needs, and practice replacing that with self-assurance.

Acknowledge both gain and loss

It’s okay to feel excitement and grief at the same time.
Connecting with others who’ve gone through similar transitions can be deeply validating.

Seek support when needed

Working with a psychologist or coach experienced in chronic illness transitions can help reframe identity around growth, not just survival.
If feelings of self-doubt or isolation are impacting daily life, reaching out for support is a strength, not a setback.

Tip: You are still you, just with more space to explore other parts of your identity. What values, interests, or goals would you like to grow into now?