This post is part of the “Patients for a Moment” blog carnival, hosted this month by Abigail over at Hidden Courage. Check out her blog later in February for more posts and links on the theme of Medical Literacy.
In my view, medical literacy is one of the most empowering skills of a chronic patient or carer, especially when it comes to lesser-encountered diseases.
If you suffer from an illness, you need an expert about that illness, and often they are few and far between. So your best option is often becoming the expert yourself. You need to be able to tell if the piece of advice the doctor or your friend’s mum’s aunt has just given you is actually helpful for your situation. You need to have reasonable evidence that the medication you’re being offered is going to actually help, and whether it could interfere with anything else you are taking or doing. Surprisingly enough, doctors often don’t check. Not every medicine or treatment is appropriate for every situation, and you don’t have to swallow whatever you’re given – check it out.
For example, knowing that your illness makes you hypersensitive to medicine means you’ll know to start on a reduced dose and work up. Knowing that you’re taking medicine X means you know not to take medicine Y because they interact with each other. In this case, knowledge really is power.
Another reason is that the misconceptions about illness are far and wide, often even embedded into the medical profession: if you’re being treated based on a misconception, you’re being mistreated. If I had known that ME was severely exacerbated by exercise and over-activity, I would not have taken the bad advice to increase my activity levels, and maybe I would never have gotten as bad as I did. If I had known to rest, maybe I’d have been improving all those years instead!
Knowing about it also means you’re in a position to educate other people. When you get the “oh, I’ve not heard of that…” you can explain what it is, how it effects you, how to get better (or at least not worse). You can bring another person into the circle of ‘knowing’ The only way to beat misconception is to replace it with the truth, and you can only give people the truth if you know it yourself.
Finally, I think that the most important reason for medical literacy about your disease or the disease of a loved one is that you are the one having to deal with it day in and day out, and you are going to be on your own most of the time. Even if you’re hospitalised, chances are you’re not going to have a team of doctors around you 24/7 to deal with every worry and symptom. The more you know, the more you can help yourself/others, and look after yourself/others.
Of course, the path to medical literacy is a hard one, and I’m not going to say that learning all you can about it is the right thing every time. Hearing all that’s wrong with you or someone you love is hard, especially if it’s things you can’t change. I am all for facing harsh realities because they are just that, reality, but it’s not easy.
Furthermore, there are some situations in which I’d say it’s the wrong thing, and they usually boil down to some reason that knowing the extent of what is happening will be detrimental. People who suffer from confusion might find that it just makes things more difficult, since they can’t ever get a handle on understanding it, and indeed it could make them more confused and less likely to know what to do. Likewise, mental illnesses like anxiety, depression and OCD might turn that powerful knowledge against you, playing in your head all the things that are wrong, convincing you you’re going to die or that nothing will be good again. If that’s you, then your ‘medical literacy’ might well be ‘I need to keep away from learning unnecessary things about what I have’.
However, for people in those situations, I still think it’s important to have someone around you who understands – if that’s possible.
My last word on this is that if you follow a quest to medical literacy, check your sources. Whilst you might get good advice from Yahoo answers, it’s not reliable – you’re more likely to find true statements from medical research papers, but they are hard to read, and the researchers may well have vested interests which skew the results (think of all the ‘research’ into chocolate being healthy, funded by chocolate manufacturers). The internet is notorious for misleading people medically, so check a variety of sources, talk it out with people who have more knowledge than you, and weigh everything carefully. Just because someone has said it, doesn’t mean it’s true. And remember, whatever symptoms you put into Google, it will probably tell you you could have cancer – it doesn’t mean you do!