I've discussed my experience, of what it was like to live with the uncertainty caused by a diagnosis, with friends who’ve experienced a critical illness. Our stories were similar. We felt incredibly blessed by friends and even by people we didn’t know so well. We received calls, visits, and letters. Well-being ceremonies and prayers were performed on our behalf. We also found that a desire to do something useful was very prevalent among people we knew. For most anyone, hearing the news of a diagnosis brings up fears and reactions towards the idea of a serious illness. Giving us support by sharing medical information or stories about what happened to their friend’s sister, who had “nearly” the same thing, often made them feel less helpless.
By the time I received my diagnosis, I was feeling ill and digesting a lot of information was difficult for me. I found that I needed to shelter myself from receiving too much unqualified medical information. On the one hand, I did not want my own fears to prevent me from seeking quality information or from finding the best medical care. On the other hand, the information I found about Meningioma on the internet was distressing. Jonathan Alter shared this sentiment in his Newsweek article “My Life with Cancer”. He said that “a little knowledge can be a dangerous and depressing thing. The Internet is a fantastic resource for patients, who increasingly use it to ask pertinent questions of their doctors. [but] It can also baffle and disorient”. Some people handle the ordeal of a disease diagnosis by consulting with lots of people and sifting through lots of information. I might have used that strategy to cope with my diagnosis if it had not been for the help I received from two doctors I know personally, who deal with oncology issues. (Blessings to Gail and John). They told me that the tumor I had was “the good kind”. So, rather than searching far and wide for a specialist, as one might do with a rare form of cancer, they advised me to focus my efforts on finding a surgeon who had done the specific type of surgery I needed hundreds of times.
At this point, I began to limit my own internet research to the gold standard medical websites: the Mayo Clinic, the National Institutes of Health (NIH) and WebMD. Since that time I have been told that patients and family members can call or email the Stanford Health Library or the health information services at CPMC where you can ask a librarian to do the research for you. This is especially wonderful if you are feeling too ill or too overwhelmed to do this for yourself.
When I felt that I had enough information to make informed medical decisions for myself, it became easier to deal with unsolicited advice. I discovered that the reason people gave unsolicited advice was either because they were trying to help me or help themselves feel less helpless. I learned that it was not my duty to listen to someone’s advice, regardless of whether the motivation was altruistic or fear based. Once I understood that, I was able to thank people for their caring before they launched into unsolicited advice giving. I often reassured them that I was under the best care possible. Controlling the medical information coming my way helped me keep my level of distress at a minimum. Sometimes, stopping a conversation before advice giving began, made room for other, more valuable, kinds of caring and support to take place. What I needed most wasn’t information; I needed to speak truthfully from the heart.
(Next: A different view of Alzheimer's)
