I’ve often sat speaking with clients at work and wished to god that the internet didn’t exist. Equally, on the other side of desk, I’ve had a recent health scare myself, and subsequently spent hours scaring myself silly on all kinds of websites before presenting to my own GP and breaking down into a sopping mess and demanding all manner of referrals to various medical specialities. Thankfully everything turned out fine, but I was delivered a timely reminder of what being the care-receiver, rather than the care-giver feels like. It can be scary, and grasping for information from any source you can, feels like it should be empowering. In all honesty though, it also made me feel more frightened and powerless.
So I can see both sides of the story.
That said though, I do think there’s a need for some balance, especially when you’re worried about your health – there’s a fine line between being well-informed, and creating levels of anxiety visible from space.
I’m not going to patronise anyone by suggesting that they should just leave every decision about their health to a doctor or nurse – it’s important for everyone to be happy with, and participate in those decisions, and patients who ask questions keep us on our toes. If people ask me something I can’t answer, then I’m honest about that, and I go and find out for them. Its good for us to keep finding out new things and also helps to remind nurses and doctors that everyone experiences illness differently.
It’s worth bearing a few things in mind though when trawling through forums and boards.
Symptoms exist on a spectrum – a headache can be just that, or in extreme cases it can be a symptom of something more serious. The only way to find out is through testing and accurate diagnosis. No amount of punditry, or reading horror stories on line about brain aneurysms is going to make you feel better, so try not to get too engulfed in worst case scenarios.
All medications have side-effects – manufacturers have a responsibility to make the people who use their medication aware of any potential issues and side effects that they may experience. Human beings are all made of the same building blocks, but we are all also unique individuals. Some people can use a certain medication with no issues, others experience intolerance and can’t take them. It doesn’t mean that you don’t need medication, it just means you might need a different one, or a different dose or combination. If you’re a woman who has ever been on the contraceptive pill, you’ll probably have spoken about it with friends, and will know that some women turned into monsters on one pill, whilst others were fine. Same thing applies with many other medications. Also bear in mind that many of the common over the counter medications we pop without thinking such as paracetemol, aspirin and ibuprofen, can have bad side-effects, but for most people they don’t. The thing is, whether one person in a million has a side effect, or one in a hundred, it still gets written down in that big scary looking list.
It takes angry, sad or distressed to speak out – most forums about health will be a collection of extremes – whether that means someone had a missed diagnosis, a wrong diagnosis, didn’t get the right treatment, was spoken to dismissively or felt like they weren’t listened to. The nature of health forums encourages people to voice displeasure – people who have had investigations and given clean bills of health, or received good care generally won’t look for somewhere to voice that. In all honesty though it’s important for these forums to be there – like I said, it’s good to keep us on our toes and to make sure we are striving to give patients the best care.
Worry attracts worry. Remember that heartbreaking scene in “Girls” where Lena Dunham’s character searches for her various health worries? I can relate to that. And all you’re going to find is other people with the same worries, or people who have had those exact scary things diagnosed that you’re worried about. You’re not going to find the people who were worried but then had a clean bill of health…
Like I said though, I’ve sat on both sides of the consultation table, and it can be difficult as hell when fear is introduced. Above all, try to keep your internet searches in perspective. It’s very easy to go down a path which makes you feel frightened. As a health professional I know that the majority of people working in health don’t mind being asked questions, and we will always try to answer, or at least start to address any concerns. As care-givers we often do fall into the trap of thinking that things are really obvious because we deal with them every day – but clients/patients don’t. It’s good for us to be reminded of that.
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