Where does health anxiety come from?

[lior]

Hey all. I've been on here for years but this is the first time I'm looking for help about health anxiety.

For the past 16 months I have had ME/CFS. It's a serious condition with no cure, and not very effective treatments. It's likely to last for years. I'm incredibly upset and angry to be disabled like this. I feel incredibly let down that doctors don't have a cure for me. My disease is rare but it's not THAT rare.

A few months ago, I got chucked out of the system at my GP's because of an admin error and had to re-register somewhere else. I haven't found a doctor I trust at the new practice... more than that, I don't feel like I trust any doctor. I've had a life long trust in doctors, but now there isn't a cure for me, that trust is gone.

Recently I've been trying new medications for my various symptoms. I'm on several things now, as well as loads of vitamins. Reading the leaflets really scares me sometimes. I'm afraid of getting the side effects.

I am in fact experiencing some side effects - my voice has gone hoarse from a new inhaler, and the sleeping aid I'm on leaves me sleepy for 24 hours. I've also got spots on my face in a way I've never had before, but I can't tell from which medication. And I basically just have to grin and bear it.

The anticipation of new side effects leaves me squirming. It's not as bad to actually experience them, but I feel unhappy about not being in control of what's happening to my body. I haven't got so wound up and anxious about side effects since reading the citalopram leaflet in 2009.

I'm not going to die from my illness, but it's temporarily ruined my life. It's a huge setback in my life's course. I'm unsure of how long I'm going to be ill for.

It's all rubbish stuff and it's normal to be upset about what's happened, but I think the level of anxiety I experience reading the medication leaflets is over the top, and I don't want to continue feeling that way. I want to combat it. So I'd like to find the root cause in order to deal with it.

Which of these factors might be causing me to get anxious in relation to health? Is it similar for everyone?

[Mindprison]

Hi Lior

Sorry to hear about your circumstances. Ive had health anxiety for nearly 10 years. It started in my late teens and bugged me for a few years and then disappeared until this time last year.

Health anxiety is a difficult thing to trace back. Mine seems to stem from an unknown condition that only affects me during hot weather or exercise where it feels like I cant breathe. That then triggered a bit of an existential crisis where all of a sudden I became aware of the fact that we arent invincible and my looming mortality caused me to obsessively worry about my health in an attempt to prevent an untimely death.

Health anxiety can also be secondary, brought on by bullying or something that makes you feel like you're different from other people.

I think your anxiety has latched onto health because of what you've been through. You trusted your doctors and ended up with a condition thay while it isn't fatal, it puts severe limitations on your life.

I think I can speak for most of us HA sufferers when I say that what happened to you is exactly what we fear. Doctors miss something which leads to you feeling like you can't trust them and so you tell yourself the only way to stay alive is to put your health in your own hands.

Life has put you in the awkward position of anticipating what the doctors will miss next. Health anxiety is something that is difficult to explain to those not suffering from it. For me it's not enough to be told that you have nothing wrong with you because my mind rationalizes that any chance even a small one is too much risk for me to take if death could be an outcome.

On the plus side it can be beaten. I did it once before and im certain I can again. You are no different and the earlier you start fighting it the easier it is!

The best advice I can give is this, no amount of obsessing about your health gives you any guarantee that you could have prevented it. I wish I could go back and tell myself that before the problem got out of hand.

Have a go at some therapy just for the health anxiety, I think it would help greatly!

[pulisa]

How did you go about getting your diagnosis, Lior? Isn't there any follow-up and support?

[lior]

Thanks Mindprison.

The doctors didn't 'miss' anything. They did all the tests but there are no tests for ME/CFS. It's diagnosed through symptoms and a lack of positive results from all the tests they can do.

Reading the leaflets of medication is what specifically makes me anxious... I don't worry that I'll get cancer or diabetes or anything. I expect to have breast cancer because it's in my family a lot, so I don't feel worried about it. It will happen and I'll catch it early and it will be ok.

I don't fear death. I just want to get well as soon as possible.

So does this count as health anxiety? Maybe not, it doesn't sound like the same thing as you. But... completely true that I feel like taking responsibility for my own health is going to be a safer bet than trusting doctors, because they are not as informed as I am about my condition. That's common with people that have rare diseases, I gather though.

Good advice about not obsessing, because it doesn't mean I can prevent the unexpected. I am VERY health focused right now but I think I need to be. I don't need to be freaking out about the possiblity of suffering side effects from medication though. If there are side effects that I suffer, they will happen whether I worry about it or not, so I might as well not worry about it, because that only adds to my suffering. I guess though, I worry about whether I should take the meds or not, if the side effects are going to be bigger than the positive effect the meds might bring. Yeah... I actually stop worrying once I've made the decision to take the meds. It's just the bit between reading the leaflet and taking the first dose that I struggle with.

I'm not sure if it counts as health anx, but maybe I can still learn from your struggles with it.

Pulisa - cos it's a rare condition, there's a long waiting list. I saw the specialist for the first time, 14 months in from having it, after 6 months on the waiting list. There's a session at the end of this month (16 months in) where I will be able to enrol myself on to a treatment course, and god knows how long I'll have to wait for that to start. The treatment is basically a 6-week-long meet up group with other sufferers, that includes a bit of CBT and meditation - stuff to manage the distress that comes with becoming so limited. Stress makes symptoms worse. In the absence of more knowledge on the condition, stress management is the best the NHS have got.

[Mindprison]

Apologies Lior, I must have missed the part about it being more of a frustration at no cure than a missed diagnosis, my brain is mush sometimes.

Health anxiety is quite a broad term i've found, in my opinion I think anyone who has any excessive worries about their health or things that can happen from medication could be said to have some form of health anxiety. Some have it worse than others and some have anxiety about a wide range of things while others may only worry about one specific thing like cancer.

I think you're right, if you have a rare condition I imagine it's only natural to be well informed with what you're dealing with. I think it's only really a problem when you're like me and you start to become too well informed with conditions that you don't even have to the point where you're questioning a doctor's diagnosis because of something you read.

I also worry a lot about medication side effects and i'm guilty of reading the leaflet with pretty much any new medication I get despite being told firmly not to do it. It's terrible so I know where you're coming from. It's probably not healthy behaviour but when I see the side effects now on any leaflets, instead of going straight to google I go to the Yellow Card Scheme website and look at the documented reactions i'm worried about. Pretty much every time i've looked it's only been a single case of it recorded in the past 10 or so years out of the millions of people who have been given the drug. That eases my mind a fair bit, I know it's reassurance seeking but it's a lot better than the alternative.

I usually end up just telling myself that it might not even have been the medication that caused it, it could have been a coincidence but they just so happened to be on that med when it happened so it's listed as a side effect.

[lior]

Hmm am I too well informed of conditions I don't have... recently I have been worried more I have a heart problem. I've had it checked out. I think it could be heartburn instead! A pain in my chest that's happened occasionally, for years. I also find my heart beats fast in a short burst for no reason when I'm at rest. Weird symptoms but I haven't died yet. I haven't got heartburn pills yet. I really should.

No... I'm not well informed about heart conditions. But I am a bit more aware that other things might be wrong with my body, that I could have overlooked before. I want to sort it all out.

I did question the doctors giving me a medication because I wasn't sure if they knew about all the other meds I was on... that's me not trusting them. I would quite like to trust them again.