After jolt of a medical crisis, support is key as patients choose paths
Every health crisis is different, but most have one thing in common: You are blindsided by the bad news. “It’s a time of upheaval, you feel out of control, anxious, you just don’t know what to do next,” says Amy Madnick, a licensed clinical social worker with UCLA Health System.
Whether it’s an urgent message from a doctor or an accident that lands you in the hospital, normal life is suddenly over. “You remember the moment you find out,” says novelist Sarah Addison Allen, who learned she had advanced breast cancer at age 39. “It came out of the blue. … It rocked my world.”
Madnick says a good first step after receiving a devastating diagnosis is to lean on others. “Don’t try to do this alone,” she advises, stressing the importance of having someone with you during medical appointments and in the hospital.
When you are anxious, Madnick says, your brain struggles to assimilate new information. She suggests writing down questions for doctors and giving a copy to your support person, who can take notes. “If you have one person who is really looking out for your back, that is huge.”
Some patients discuss their situation only with a few people; others open up on social media. There’s no right or wrong approach. Everyone has a different comfort level.
“I don’t share a lot of personal things on Facebook, but I did share the cancer,” says Allen, explaining that her treatment began just as she was set to launch a book tour. “I had to cancel everything. Instead of just disappearing, I felt I owed it to the readers following me on social media to give them this explanation.”
What occurred next surprised her: “The outpouring of support from people I didn’t even know was phenomenal. I had no idea that would happen, and it was gratifying and it helped tremendously in my journey. It was an amazing thing that I did not expect.”
At the onset of her ordeal, Allen took a break from writing. Later, while undergoing radiation, she brought along a notebook to help pass the time. Sitting in waiting rooms, she began what would become her sixth novel, “Lost Lake.” The bestselling book is not about cancer, but the story explores loss: “I can say without a doubt I never would have written ‘Lost Lake’ and that theme of grief had I not gone through this horrible thing.”
Now, two years in remission, Allen believes she emerged happier, with a healthier outlook on life. She says that before getting sick she was ruled by fear and anxiety; that all changed during her illness. “It’s hard to give credit to something so terrible, but the cancer taught me a lot of things.”
That kind of transformation has been studied by psychology professors Lawrence Calhoun and Richard Tedeschi at the University of North Carolina at Charlotte, who call the phenomenon “post-traumatic growth.” While it doesn’t erase the pain and stress of a crisis, Calhoun says some people can make “positive change that comes about as the result of a struggle with a very difficult life event.”
Advice on coping with a health crisis
Going through a health crisis is never easy, but there are steps you can take to help you cope. Amy Madnick, a licensed clinical social worker with UCLA Health System, offers these suggestions:
• Call your support system into action. Don’t be embarrassed about asking for help. People who care about you will want to be there for you. “I worry about people who say they are fine,” says Madnick. “How can you be fine when your whole life has been upended?”
• Get informed and take an active role in your care. Advocate for yourself and have someone with you at all medical appointments. If you don’t understand something, ask the doctor to translate it into terms you can understand.
• Find out your options. This may mean seeking a second opinion. Good doctors know this is reasonable.
• Keep good records. Use a notebook to keep track of appointments, tests and medications, as well as to record how you are feeling along the way. Writing in a journal can give you perspective when you look back.
• Allow yourself to feel the emotions that come up. If anxiety is a problem, talk to your doctors or a hospital social worker. Some hospitals offer animal therapy and other programs to relieve stress. Turn to activities that have helped you cope in the past, such as reading, talking to friends, yoga, watching movies or listening to music.
• If you are hospitalized, bring a few personal items. Not only can these things brighten your surroundings and lift your spirits, they also let your healthcare team know that you are more than just a patient with a diagnosis.