Staying informed about your condition is an important aspect of managing your health. I am probably preaching to the choir on that one, right?
While my clients generally agree with me on this one, at least in principle, getting started on the information-gathering process when they are initially diagnosed, and staying informed as they move forward on their treatment journey, is not always so simple.
First, the fear factor. Getting informed can be scary. You may be concerned about running to information that you don’t want to know, and discouraging yourself at a time when you are feeling pretty discouraged anyway.
And then, all that information. You may be running into information that may or may not be relevant to your specific situation or diagnosis, or that describes a very limited number of patients and not is applicable to the majority, like certain side effects. You may read information that is based on the experiences and opinions of one patient, or professional, or not-so-professional, and that is unreliable. You may read information that is just plain not true. Or that is so full of medical jargon that you don’t know what to do with it (starting with the package insert that comes with your medications).
Healthcare professionals may not always take the time to explain things in detail or in words you understand. Books and brochures may be biased, or hard to understand. And the Web is a “Wild West” of information from all kinds of resources, reliable and unreliable, yet one Website may, at first glance, look as credible as another.
As I said, getting started isn’t easy.
I have had clients who just didn’t want to know anything about their condition, at least not at first, and so they avoided information altogether. They let their doctor tell them the basics, and didn’t do any exploring on their own. They didn’t want to know any more than they needed to.
Some of these clients gradually started adding to their knowledge, others have continued to struggle with their fears, and continue to avoid knowing in the hope that they will also avoid being more scared. These clients continue to rely on their healthcare team and feel that if there is something they should know, their healthcare team will let them know.
Others jumped in and quickly find themselves overwhelmed. They run into information that is focused on symptoms, side effects, and potential outcomes, that is confusing, or scary. They decide to pull back for awhile, or to stop completely.
There are those who started slow, or not so slow, focused on what they most needed to know, bookmarked various sites, read books and brochures, and gradually became experts on themselves. Maybe with a friend or family member along for the ride.
And let’s face it, some healthcare professionals are more likely to encourage information-gathering – and the questions it raises with their patients – than others.
Sure, it’s better to know than not to know. And there is a lot of great, useful, trustworthy information out there. But how do you get started?
Any of your own experiences to share – positive or not so positive – about how you kicked off the process of getting informed about your condition?
Any advice for overcoming barriers, like the fear factor, that may prevent someone from learning more about their diagnosis and its treatment?
Any words of encouragement that you were given, or that you would give to someone else?
Looking back to when you were first diagnosed, any information-gathering advice you wish you someone had passed on to you?
Any techniques you use to stay up-to-date now?
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