I just read an article about eHealth literacy and anxiety and it got me thinking. Actually I’ve been thinking about it a fair bit lately – since my last appointment with my breast surgeon. At that appointment, the nurse practitioner told me “you have been cured”. It is the first time that someone has used the word “cured” about my cancer. I also found myself wondering if it was appropriate. I wondering if “no evidence of disease” is a better term than “cured”. I’m pretty sure my medical record says “NED” rather than “cured”. At my 6 months follow up I made my surgeon say “no evidence of disease” out loud because I needed to hear those words. But this got me thinking. If I didn’t know as much about breast cancer and recurrence, would I feel better about being told I was cured? Would I believe it and would it allow me to move on with my life with less anxiety?
I found that being prepared for chemotherapy helped reduce my anxiety about it. I had read a lot, as had my husband. We had some sense of what I would be experiencing. I had mentors (that is the best word I can think of – peers who were ahead of me in the chemo process), who helped me feel more prepared for chemo. So, being health literate helped reduce my anxiety as I went through active treatment.
But now that active treatment is over, the health literacy isn’t helping me. I know too much about this disease. I know that because of my age I’m at increased risk for recurrence. The information that I have means that I cannot simply accept it when the nurse practitioner uses the word “cured”. I cannot believe it. It does not help me feel less anxious.
I’m left wondering if I would have had the same reaction post-treatment? Would I have found my self as anxious, if I wasn’t so aware. For me, being aware helped me advocate for myself during active treatment – but now it just makes me question. It makes it harder for me to trust my healthcare team. I find myself not believing when they tell me I’m OK. I’m doing fine. I’m cured.
It makes me wonder, does participation in the breast cancer blogosphere make me more anxious? Or is it participation in support groups that is causing an increase in my anxiety? Or is it just that I’m in that post treatment phase and anxiety is something that was going to happen to me anyways?