Last month I had the pleasure of receiving an advanced review copy of "Chronic Resilience: 10 Sanity-Saving Strategies for Women Coping with the Stress of Illness". As I read through the book, I made note of many issues that are relevant to public health practitioners. Therefore, it is a pleasure to have Danea Horn expand her comments on these topics for Pop Health readers.
If you would like to connect with Danea, you can visit her website or twitter.
Leah: In public health, we talk a lot about how our society’s “culture” can promote or harm health. In several places in your book, you talk about the connection between our societal values and our health. For example:
Page 33: “Part of the reason we try to be all things to all people is our culture. Have you ever sat through a business meeting while someone is sniffling and sneezing and exposing everyone else to their cold? In that moment they are valuing achievement, money, or appearances above their health and the health of everyone else in the room.”
How can we expand your strategies beyond the individual level? How can we identify and live our health values at the neighborhood, community, and organization levels?
Danea: It only takes one person to start a conversation that can become the catalyst for big changes. Start talking to people at your work and in your community to get a feel for what is valued currently. The policies (written and unwritten) in our offices and items at our potlucks will say a lot about what we collectively value. If you find inconsistency or confusion in your conversations, open up a dialogue with the leaders in your organization or community to discuss what you would like to collectively choose to value. From here you can brainstorm together ways to influence change. They can be small changes like creating a healthy living block party where people share nourishing dishes and swap good-for-you recipes or larger changes like paid sick leave (which is not mandatory in every state…yet). Never be afraid to speak up. A big theme in Chronic Resilience is controlling what you can control and talking is in your control.
Leah: In Chapter #6, you write “It is up to you to decide how public to make your health.” You and several of the women you interviewed for your book have blogs that document your health journey in a very public way. Public health researchers Ressler et al (2012) have identified many benefits of patient blogging (e.g., patients report a decrease in feelings of isolation).
What benefits have you experienced as a result of writing about your health? What challenges have you encountered during the process of sharing your story publicly?
Danea: Writing helps me process what is going on from a different perspective. I am all about learning from our challenges, so each post I write is a search for a lesson or message that my diagnosis is pointing me toward. I can feel frustrated about the progression of my disease and start out writing a rant, but I find that I naturally end up with a message about letting go of my ideals or acceptance. Reframing my health in this way has been very empowering.
I haven’t encountered many challenges by being public with my health journey. Commenters have been very supportive. That said, I am discerning about what I choose to share and do keep some things private. Challenges I know other people have faced, and someone who blogs publicly about their health should be prepared for, are people sharing remedies, treatment recommendations, cure-all solutions and pleas to have faith in a deity they may or may not believe in. While these all come from a caring place they may feel intrusive. Also, you may want to give a heads-up to your close family and friends before you post anything particularly revealing, emotionally or otherwise, that you haven’t shared with them in private first.
There are a number of ways to benefit from writing about your health. Doing it publicly on a blog can create a sense of support and community, but if that feels too invasive, you can join support forums anonymously, create a private blog or journal pen and paper old school style.
Leah: In Chapter #7 (“Empower Yourself With Research”), I was thrilled to see your emphasis on helping patients evaluate the validity and safety of medical information found on the Internet. This is a huge challenge in public health! Our evidence-based messages and guidelines often compete online with anecdotal evidence and unscientific studies.
Why did you decide to dedicate a portion of your book to this discussion? Why is it so important for patients to discuss what they find online with their medical team?
Danea: Before I became discerning about what I read online about my diagnosis, I was completely stressed. I read way too much from too many random sources to properly sort out what I should believe. I also noticed that I was searching for how I was going to become sicker (the side effects, complications, and progression of my illness) instead of searching for how I could support my heath. Fortunately, I realized most of my stress was coming from worry created by endless Internet searching, and I decided to take a different approach.
I found a few sources from trusted physicians and nutritionists to study and implement. I decided to stay focused on my personal symptoms, medications and prognosis instead of what other people I didn't even personally know had experienced. I also started a more open dialogue with my doctors about the diet I wanted to try and some of the studies I had read. When we research and experiment with our health without informing our doctors, we may have conflicting approaches which can create drug interactions or other harmful complications. Doctors are there to support us. If you are uncomfortable talking with yours, it’s time to find one that you trust enough to be completely open and honest with. We should all have a doctor who will work with us to find treatment solutions we feel comfortable with.
Leah: A big thank-you to Danea for making the time for Pop Health! "Chronic Resilience" is a great read for those with a personal and/or professional connection to chronic illness. For public health clinicians, practitioners, and researchers who work in the chronic illness arena: I think you will get a unique first-hand view into (1) the mental, physical, and emotional challenges that affect this population, (2) the incredible resilience that those with chronic illness show on a day-to-day basis (what can we learn from them??), and (3) specific strategies that can be employed to support patients with chronic illness. As Danea and I discuss above, these strategies have the potential to be expanded from the individual level to offer support to entire communities.
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