Another topic that comes up frequently in my work with cancer survivors is internet research. One problem with researching your cancer on the internet, is that then you have all this information that you might or might not be able to do anything with. Another problem (and probably the biggest) is you might now have some information that is completely freaking you out.
Now there are some people who do some research about their cancer on the internet, become well-informed about their situation, treatment options, prognosis, etc., and then turn off the computer and move on with their treatment and their lives. However, the majority of people I’ve talked to don’t do this. They find information about the percentage of people who do well on the treatment they’re doing and the percentage of those who don’t. Or even worse, the percentage of people who die.
So where do you draw the line?
When I was 8 years out from my own cancer treatment, I was making some decisions about health insurance plans, since I was self-employed. I looked for some information/statistics about the risk of recurrence after 5 years for my specific cancer. I did not like what I found out. It scared the daylights out of me. I had been thinking I would have almost no chance of recurrence, and the research told me otherwise. Was it from a reliable source? Yes. Did it apply to me, my exact situation, age, gender, etc.? I don’t know…I was too wigged out to look any further.
So how do you find that balance between being well-informed and being freaked out?
1. Don’t automatically go online to research your cancer because that’s what you think you should do, or because you think you want to know. Make a conscious decision that you are going to do research and be aware that you might find out things you don’t like. Decide what will be useful or helpful about knowing the information you’re looking for. Once you know it, it’s hard to un-know it, so be mindful about why you are looking. What will you do with this information? Will it help you make a decision about treatment? Know what questions to ask your doctor? If so, then it might be worth the risk. If you don’t know what would be helpful or useful about knowing the information, figure that out before you go online.
2. Decide how you will deal with this information if it turns out to be upsetting. If you have good coping skills, you might need to use them. For example, after I was done crying because the information took me by surprise (I set myself up to expect only positive information) I reframed my thoughts. Instead of letting the research tell me there was a good chance of me not making it to my 10th cancer-versary, I told myself that I could be (and likely, would be) one of the people in the other percentage group who would live a long life; then I committed to focusing on that thought instead of the former.
I sometimes talk with clients about an “internet diet.” Just like with food when we go on a diet, we don’t go completely without, we just find a balance with our eating…not over-eating and being careful about what we consume. It’s the same with an internet diet…don’t over-research and be careful about what information you consume.
What has been your experience with internet research? I’d love to hear from you.
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