When Did I Become My Illness?
Original source
When Did I Become My Illness? (opens in a new tab)This is community discussion, not verified research or clinical guidance.
In a personal reflection, a nurse living with ALS describes grieving changes to her voice, mobility, independence and social identity. She says that being treated as a diagnosis or wheelchair user can make her feel invisible, while humour, curiosity, advocacy and relationships remain important parts of who she is. She also highlights the physical and emotional demands on family caregivers.
Why this matters
The account shows how ALS can affect identity and social inclusion alongside physical function. It underscores the importance of speaking directly to people with disabilities, recognising their continuing agency, and supporting caregivers as well as the person living with ALS. The writer also describes helping create an information booklet for people newly diagnosed with motor neurone disease or ALS using an eye-gaze computer.
Limitations and context
This is one person’s community account, not a clinical study or representative survey. It describes her experiences and perspectives and cannot establish how common these experiences are or assess the booklet’s effects.