Health anxiety ruining life!

[CandleRigg89]

Hi all - looking for some commiserations/support/experiences. This might be long so thanks if you read.

I’ve had health anxiety ever since I can remember. I did years of therapy/medication and thought I’d got on top of it and managed it well from about 25-the last year. I got married and had my son who is now 20 months old. Since having him, I have been a wreck.

He was diagnosed with congenital hypothyroidism from the heel prick. Unexpected, but not the worse diagnosis in the world. One daily dose of medication and regular checks, but outside of that it’s like he doesn’t have it. Developing totally normally etc. But since then, it’s like it’s given my brain the green light to go psychotic. I have been convinced he has every rare disease or genetic condition known to man at some point.

The most recent is he has a small moveable soft lump thing just below the back of his knee. He also grazed that knee a couple of weeks ago (healed now) and is just getting over a virus that he and my husband had, causing a high temp. Logic tells me it’s probably a very slightly enlarged lymph node, or a cyst, and will probably go itself in a few weeks. Obviously will take him to doctors to have it checked anyway.

But anxiety has me utterly convinced that he has a soft tissue sarcoma and we’ll be receiving chemo and surgery after the initial diagnosis. I’ve spent the last two days emotionally living like this is true.

I have this seemingly perfectly healthy, active, amazing boy infront of me and I cannot be in the moment and enjoy him for fear of the what if’s and worse case scenarios. I am both sick of myself and terrified this is actually instinct and I’m right.

has anyone felt like this? Got over it with help? I can’t go on like this, it’s completely miserable

Yes I've felt like this for many years. When I was younger, it was mainly focused on my health. Now I'm older and have had children, I'm constantly worried about theirs. I have no advice unfortunately as I'm still in the midst of it. It's draining. My daughter has severe asthma and I've kept her off of school a lot because when she gets sick I get scared she will have an asthma attack at school and die. It's so horrible, I'm finally getting help with the school from that now though and it's getting better. But the thoughts are still there! I've had CBT, didn't help. Would love to know the answer to stop feeling like this. I sympathise, it's so difficult.

Thanks for your reply. So glad someone can relate, as rubbish as it is. I just can’t stop catastrophising everything. Taking what is in 99% of cases something benign and making it terrifying. I’m scared I’m going to put it onto him too, as hard as I try not to.

has it been since your kids were young too?

Unfortunately I suffered with it before having my children so I don't know what triggered it. When my daughter was young, it got really bad though. I wouldn't sleep at night incase she died in her sleep. It was hell. It's getting better but still a struggle tbh

I meant to reply to this when I first read and found it again in my one of my tabs.

I don't have any answers but know exactly how you feel. I had slight health anxiety when my first was born, but it was low level. Then, while pregnant with my second, he came back high risk for Downs after the 12 week scan. Well that sent my anxiety through the roof! I can't tell you how bad it's been. You wouldn''t believe the extremities of my thoughts. Further testing came back low risk. But I couldn't (and I'm still struggling) to shake the fears something could be wrong.

I've struggles with thinking he had mosaic DS and that's why typical features weren't obvious. I've had unshakeable thoughts that he had some other kind of obscure syndrome, much like you. I've been (and still am a little) suspicious he has autism. It doesn't help that (to me) he has slightly odd features. I've had further blood tests done for syndromes. Yet, the good results have done little to allay my fears.

The fact that he is meeting milestones, is very bright, makes good eye contact, laughs and smiles, plays well with his brother, etc. does little to allay my fears. No one else sees what I see. His nursery always has positive feedback.

At the height of my anxiety, I'd have panic attacks thinking my son would never live a normal life. Yet, here he is, behaving like a regular baby/toddler and defying my concerns. But I still can't absolutely shake them them.

I know I have issues. But there's a little something inside of me that tells me it's actually mother's instinct.

Health anxiety by proxy is awful, so I just wrote that jumbled mess to let you know you are not alone.

I have been reading ;why has nobody told me this before' by Dr Julie Smith. It's helped a little. I try to focus on rationale and facts, rather than feeling. It brings me down to earth.

Thank you so much for sharing - it does help to know that other people struggle with this too. It seems to just take one trigger to send you into the abyss.

I totally relate to logically knowing it’s anxiety, but wondering if maybe it’s actually instinct. It’s such a fine line to tread - dismissing yourself, and trusting yourself to advocate for your child. How do we do both??

thank you for the book recommendation - off to buy it now!

I really relate to all the experiences on this thread too. Particularly the balancing of "mother's instinct/follow your gut etc" (argh!) and recognising your irrational anxiety. I am going through a reasonably good stage at the moment after a period after my second kid when I was seriously spiralling. Sleep or the lack thereof is a major trigger for me so I try to get as much as I can. Also talking to friends, though embarrassing, can help work your thoughts through. But it's really hard and I totally sympathise.

I've found my people. It's such an awful thing and I truly wouldn't wish it on anyone. I've had GAD & OCD for many years but my health anxiety was unfortunately triggered by a sudden death of a child in our family. All my logical reasonings no longer helped and I had a breakdown when I had my first child as I was just so frightened all the time. I was catastrophising, googling symptoms and truly believing my child has every awful condition/disease going. It was hell. I'm much better now but still battle everyday. I KNOW it's anxiety but can't help the what ifs. It rules my life. Sympathies to everyone going through the same.

Yes! Everything you read is ‘trust your gut’ and I’m like ‘well last mild virus my gut was sure he had leukaemia, of course until it cleared up in a couple of days, so my gut clearly can’t be trusted’

It’s very unsettling going through life unable to trust your own initial reactions! I’m glad to hear you’re feeling in a bit of a better place - I definitely need to prioritise sleep better. His sleep can still be up and down (especially with the nursery viruses meaning every few weeks we have a night or two of terrible sleep as he can’t breathe through his nose/has a temp etc) but overall he sleeps well, but I often find my mind racing and keeping me up, then use coffee to get me through work. Definitely not healthy atm!

I am so sorry for your and your families loss. I can’t imagine how much validation that awful experience gives your own anxiety, and how the worst possible thing that could happen doesn’t seem so far away.

Can totally understand that trigger point. Mine was my Dad receiving an out the blue prostate cancer diagnosis when he was only 43 and I was in my late teens. He went to two doctors who pretty much told him it was in his head, couldn’t possibly be prostate cancer as he was too young, and to try not to think about it. It wasn’t until he pushed to see a third doctor who did an exam and blood test, and referred him to a urologist, that he got his diagnosis. Luckily it was still very early (despite a 12 month delay in diagnosis thanks to those first doctors) and now, 17 years later, he’s still fit as a fiddle. But I’ll never forgot the way he was told it was extremely unlikely to be cancer all the way up to the day of his diagnosis, only for him to be an outlier statistic. Made me realise that it doesn’t just happen to other people at a young age. Then my son being diagnosed with a rare disease has just been the icing on the cake 😅

How are you feeling @CandleRigg89 ? Did you get the lump checked? I hope you've found some relief from your anxiety.

Hello! Thanks so much for checking!

Yes, we saw an Orthopaedic Surgeon at the children’s hospital who did a very thorough exam and confirmed baker’s cyst! He’s referring him for an ultrasound just to confirm, but said it’s non-urgent so will be months away. Said he is ‘perfectly assured’ it’s absolutely nothing to worry about.

Ive been reading books about anxiety and booked in with a CBT counsellor. Determined to get on top of this anxiety!

I just jumping in to say yes - me! A close family member died suddenly when we were both under 10 and I think that was the trigger for anxious thoughts but it got much worse after I had kids. In particular after I had my youngest her older brother who was 3 took ill and I had to really persevere to get a diagnosis.

I wasn't really that anxious about my own health until I got sepsis about 4 years ago and that definitely knocked me for six and now I have OCD about temperature taking.

It's exhausting and honestly it's humiliating because I hate needing or rather wanting reassurance and I hate not feeling confident in my parenting.

All the time! Everything is bound to be the worst it can be and every test is bound to show something awful. It’s exhausting to live in a constant state of anxiety.