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.
Thank you
The one bite at a time idea resonates. I’m learning to slow my thinking and not take everything on at once.
I also smiled at the overfilled dinner plate comment, very relatable.
Arboreal therapy sounds lovely…nature often helps my thoughts settle too.
I can't say almost dying 3 times were comfortable experiences, the worst was being stuck on a hillside in a gale that had rocks the size of my head rolling down at me and ones the size of my fist flying about. Obviously I managed to get down again, that was the second time, the third time I had a massive and sudden drop in blood pressure whilst in hospital, the senior nurse who came to talk to me about it aterwards was amazed that I was so calm. I told her it was nowhere near as bad as the second time and all I felt was that I was sinking into a warm brown place and that everytime someone rubbed thier knuckles on my chest to see if I was responsive I asked them for 5 more minutes, it was like being told to get up for school by your mum when you're warm and sleepy
I am confident that there are many of us experiencing similar situations post diagnosis. Research numbers are not needed to impress this for people that in this group as I think we all "get one another" about it.
Thank you for your appreciation. It helps me feel better to engage with others in this fashion - both to help define my own thoughts and experiences and to get a sense of value for helping others.
it’s given me a lot to reflect on.
I am told metaphorically that the way to eat an elephant is one bite at a time. Sorry if it gives you a lot to think about. I tend to overfill people's dinner plates too, hehe something for me to think about there! :-)
As I have just posted in another response that I expect that I and others shall still be here if you want to discuss it more.
It's a nice sunny day where I live and I'm off to the garden to do some arboreal therapy :-)
I hope the sun is shining where you are at present.
Best Wishes
Thank you so much for sharing thisKate Kestrel .
I really felt the empathy in what you wrote, and I’m sorry you went through such a frightening illness it makes a lot of sense that health anxiety would deepen after that.
A lot of what you said about age, uncertainty and mortality really resonated with me.
I recently had a health scare where I didn’t know if a lump in my head was life-threatening, and my anxiety spiralled quickly. Now I am just waiting to see if they are going to operate because it may affect my eye it isn’t straightforward.
What is helping me is going into nature and listening to Ram Dass podcasts it helps quieten the noise and bring me back into the present. I am trying to live in being rather than outcomes.
I will look into Thich Nhat Hanh.
I also related to what you said about feeling suicidal at times for me it isn’t about wanting to die, but about wanting the noise to stop.
It helps to know I’m not alone in that.
Thank you again for taking the time to write such a thoughtful response.
Thank you for sharing this.
I really relate to what you’re saying about anxiety being less about illness itself and more about fear of access to care when it’s needed that uncertainty can be terrifying.
I’m trying to hold onto the same idea you mentioned doing what I can and letting go of what I can’t control, even though that’s much easier said than done. It really helps to know I’m not alone in feeling this way.
Thank you for sharing this.
I really relate to the loop you describe especially how autism and sensory issues can make doing the right thing with food feel much harder, which then feeds the anxiety.
The cup of tea solution made me smile sometimes comfort really does matter.
Thank you for sharing this. What you said about coping when things actually go wrong, and that it’s the anticipation we won’t cope that causes so much distress, really resonated with me.
Thank you for sharing
I really appreciate you taking the time to respond
Thank you for sharing this so honestly.
A lot of what you wrote really resonated with me, especially what you said about accumulated experiences, burnout, and gradually reconnecting with yourself and your values.
I appreciate the thought and care you put into this it’s given me a lot to reflect on.
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
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.:
I have had health anxiety for as long as I can remember - and it’s still one of my biggest problems. I spent a lot of time in hospital as a child and that’s possibly one of the reasons it’s such an issue for me, but since realising I’m autistic I can now understand that there are myriad reasons while this would be an issue for me. I had a serious, life threatening illness in late 2021 and that left me with PTSD and terrible, extreme health anxiety that has taken me a long long time to make progress with. Only by mid 2025 was I starting to live a more normal life really. So I have so much empathy for anyone who struggles with health anxiety - because it’s an awful thing to struggle with.
I think it can get worse with age - for various reasons. The fact that we’re more susceptible to illness as we age is an easy thing to get paranoid about. Also I’ve found that the menopause increases anxiety issues. And also we can have relatives or friends that get ill or die - which again makes us more paranoid. The pandemic hasn’t helped of course. And also I think being older can make you just think more about illness and death as - let’s face it - the inevitable is nearer.
Anyway - I’ve tried lots of approaches to improving my health anxiety issues. I had NHS talking therapy over the phone for the PTSD after my illness - and that definitely helped me. Also I withdrew a lot from people for a while - and that gave me time to recover without too much ‘threat’ around me (I was very anxious for a long time about catching viruses of any kind). And then I got really into the teachings of the Buddhist Zen Master Thich Nhat Hanh - and that’s possibly definitely has massively helped me. They have a thing they say : “it is the nature of being human to get sick, it is the nature of being human to die” - we cannot escape these things. We have to accept it. We try to run away from it and that just makes us more scared. Fight or flight doesn’t get rid of our fear. The only way to cure a fear is to face what we fear. The ‘running away’ only makes things worse. We will one day get sick, we will one day die. We have to accept it. That knowledge can help us to see the true value of LIFE - and make the most of the time we have. Buddhist teachings on ‘no birth, no death’ are also really fascinating. I would recommend them to anyone struggling to accept the fact that we will all one day die. Also teachings on impermanence and attachment, inter-being and ‘no self’ and ‘emptiness’. . A lot of other cultures and philosophies have a great deal to offer in helping us to face illness and mortality. Western societies are very poor in this respect - they focus on the self and the ego, and hide away death and make it a taboo subject - which increases the fear.
What helped me most was the writings and talks of Thich Nhat Hanh and Plum Village - these teachings are widely available and free on YouTube and the podcast ‘The Way Out is In’. There are lots of books and audiobooks.
We can’t escape illness and death. Obviously we can help ourselves a bit by living healthy lifestyles - but no matter how we life we will all one day get sick and die. We have to accept that - and if we can cultivate acceptance of it we will feel less fear of it. It will never be easy - but it’s not right to ruin our lives because we are constantly living in fear of something that is in the future and also inevitable. I’ve found Mindfulness very helpful - because the majority of the time we are not ill NOW. The more we can live in the present moment the less we will fear what’s in the future.
I still have health anxiety - I have bad days sometimes with it - but the things I’ve learned from Thich Nhat Hanh and Plum Village have been a massive help to me. I can now live a life that is much closer to ‘normal’ than previously. I still have a way to go and will probably always struggle a bit with it - but I have some really helpful ‘tools’ now to help me cope much better. I want to express my solidarity with everyone who struggles with health anxiety - because it’s a very unpleasant thing indeed. At times I’ve felt suicidal because if it - which is ironic really isn’t it?!
My health anxiety had lessened until a few years ago. Now it has returned with a vengeance.
I’ve been seriously ill in the past but the NHS was fantastic at that time. My anxiety now is more to do with not being able to contact my GP if the occasion arises as it’s becoming nearly impossible here; in fact there was a BBC news item a few days ago saying just this thing. I’m concerned that the emergency services will be unable to respond in a timely fashion if I’m in need and I’m worried that I will be left in a hospital corridor for days while the public walk past my trolley and stare at me lying on a urine soaked mattress or worse, because that’s what is happening in N. Ireland.
I’m anxious about getting ill but I’m trying to tell myself that I’m doing what I can and to leave what I can’t change. In my part of the woods the politicians from different parties must work together to implement policies but they spend much of there time explaining why the other parties’ proposals are ‘wrong’ so a proposal that’s beneficial can’t always be pushed through.
My anxiety in general has risen as I've aged so I do think health is just one of the things it's landed on. I've also become more aware that I'm at an age where the health issues start and because of my autism I do struggle to make healthy choices such as with diet as it's a sensory nightmare.
I hope for a day where I can share your mentality. I'd perhaps like to skip the 3 almost died experiences though.
buying a heavyweight newspaper
A second use could be to slap noisy people in the waiting room.
I had a 'minor' stroke in 2024, strangely, I was entirely calm about it. I rather think that coping happens when things do actually go wrong, it is the apprehension that we will not cope that is the problem.
The extensive series of outpatient tests that I had for about 6 months following - no direct cause was found - was the most trying for me. I found that buying a heavyweight newspaper at the hospital shop and reading it in the waiting rooms helped.
I actually worry less about my health now than I did when I was younger, I think mostly because I have very good GP's who I trust and I'm in a much much better place mentally than I was.
Also having had 3 almost died experiences enabled me to face my own mortality better, I don't want to die and I fear pain, but I know I'm mortal, I tell myself I don't need to worry and I've been dong it for so long I've actually started to believe myself.
My health anxiety was bad when I was younger, had therapy for it. One of the biggest things keeping me in the loop was asking Dr Google. Nowadays, it’s come back a bit, but it’s all related to my diet. I worry too much about what I eat. I do eat rubbish, but I try and have fruit and veg too. I’m always worried I’m going to end up having a stroke or have heart disease etc. Perfectly possible. My dad has a heart attack at 60 and his dad died of a heart attack too. I don’t want to die. I just obsess over it a bit too much. I just don’t like the texture of most veg. Crunchy veg is a no no. It has to be soft. The same with fruit. This creates a problem whereby I want to eat more healthy, but my autism related sensory issues hampers my efforts. This then creates more anxiety. The solution is a cup of tea.
