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Autism and health anxiety as I get older

Lonehare12

I’m autistic and finding that health anxiety is getting harder as I get older.

I’m very aware of my body, and things like new sensations, appointments, and waiting for results can feel overwhelming. At times this feeds into a sense of hopelessness.

I’d really appreciate hearing from others who relate or have found ways of coping.

Parents

  • A healthcare notebook (the combined physical health, mental health and neurodivergent health) via a physical ring bound A5 lined notebook - which I update and take to appointments is helpful to me, where I can note and track e.g.:

    • what are my concerns,
    • what do I know,
    • what do I want to know,
    • what did a clinician explain (please use a diagram to aid my recall),
    • what do I want to find out more about by myself,
    • what can I do if I need a second opinion,
    • what essential things do I need to ensure that a clinician knows about my healthcare history,
    • what reasonable adjustments do I need to communicate to healthcare providers,
    • what is happening next,
    • what has been ruled out as a concern,
    • what is the priority order of a current set of competing issues to be resolved,
    • what are the management strategies for chronic conditions,
    • what are the respective review cycles,
    • what upcoming healthcare appointments do I have scheduled,
    • what would it take for me to feel prepared for my participation,
    • what essentials do loved ones / clinicians / trusted adults need to know if I am unable to advocate for myself,
    • what techniques can I deploy to aid my regulation / conserve my energy / avoid frustration or fear or freeze as I navigate my healthcare,
    • what process can I operate if something has gone wrong with my healthcare,
    • what options are available if I would prefer to arrange for someone to accompany me to an appointment or procedure / act as my advocate when I attend a healthcare setting,
    • what strategies can I (and healthcare service providers) use to reduce the executive function burden upon me in support of my successfully navigating my healthcare needs,
    • what are my healthcare "red lines" (e.g. minimum required behaviour standard around me, respectful style of language used towards me, prior stated preferences / options decided in my treatment, unreasonably crass assumptions about me not to be tolerated, my trauma triggers to be mitigated).
  • in reply to DormouseAtRest_25

    Thank you for sharing this.

    I really like how organised and thorough your notebook is.

    I can see how having everything in one place helps reduce overwhelm and gives you a sense of control, especially when health anxiety spikes.

    I’ve been trying to find ways to steady myself too, and reading or listening to something grounding in nature helps me when things feel uncertain

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  • in reply to DormouseAtRest_25

    Thank you for sharing this.

    I really like how organised and thorough your notebook is.

    I can see how having everything in one place helps reduce overwhelm and gives you a sense of control, especially when health anxiety spikes.

    I’ve been trying to find ways to steady myself too, and reading or listening to something grounding in nature helps me when things feel uncertain

Children
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