I’m no stranger to promoting self-care. On this blog, I’ve discussed how to Start Your Day on a Positive Note, Real Self-Care When Your Life Isn’t Paradise, Dealing with Long-Term Stress, and how to Make Over Your Life … Gradually. These posts address how minor and major actions can have a cumulative effect on how you can survive and thrive through hardship.
Self-care is a process, not a product.
When I haven’t discussed self-care, I’ve told you all to Create More Space for Kindness and Don’t Forget About the World Around You. In those posts, it was about creating more space to care for others and cultivate change in the world.
My past posts haven’t talked explicitly about community care—specifically community care for yourself.
In the Mashable article Self-care isn’t enough. We need community care to thrive., Heather Dockray states, “Unlike self-care, community care does not place the onus of compassion on a single individual … Community care involves more than one person. It can include two, three, or possibly hundreds of people. You can practice community care in your personal offline life or even in digital spaces.”
I was reminded of Dockray’s description of self-care when I was diagnosed with breast cancer. I told my boss and a friend from work, close family members, a former partner, tons of friends, and my landlord’s wife.
When I first visited the hospital post-diagnosis, I was given the booklet that you see in the picture above. It was written for women who were newly diagnosed with breast cancer. It gave women advice on how to take care of themselves as well as their partners and children.
As I was reading the book, a line stood out to me. I re-read it. As you can see in the photo below, there was a section on planning for a hospital stay. The first bullet point said, “If you are sensitive to noises, pack your Walkman and favorite tapes.”
I was bewildered.
I checked the year of publication, and it was 1996.
Why would an excellent hospital give me a booklet decades after it was published?
Was the advice timeless? No. In fact, in aged poorly. Here are quotes from it:
There was a section on partners, and it talked about husbands almost exclusively: “Husbands of women with breast cancer often talk about how overwhelmed they are feeling, and how much they miss their wives ‘as they used to be.’ No one expects you to pretend that you are carefree, but it will help your husband if you can sometimes focus on the happiness of the moment.”
On middle school children: “They may have an especially difficult time with the changes in your physical appearance and ask you to always wear a wig (rather than a hat or scarf) when their friends are around. Preadolescent girls, obviously, may be especially upset by your breast surgery and preadolescent boys may be totally wordless and embarrassed because of their sexual association with breasts.”
On high school children: “Some kids this age find the whole disease monumentally embarrassing, and since they are adolescents, what matters most to them is what their friends think. Try to maintain a whimsical tolerance of your teenage son or daughter if at all possible.”
“Never lie to your children.” The booklet declared this multiple times, and these words were in bold. At the same time, many of the other messages in the book were telling the newly diagnosed woman that her breast cancer would cause her loved ones to be overwhelmed, embarrassed, and upset.
I was confounded.
As I mentioned in Resisting the Attraction to Distraction, my aunt died of breast cancer when I was 17. What I didn’t mention is that she hid her diagnosis from her children. Reading the advice in this booklet made me wonder if this was the type of literature she had received after her diagnosis.
When my friend met me for my next hospital visit, I told her that I intended to share my feedback on the booklet with the social worker. Rather than focus on every excerpt, I decided to emphasize that it was from 1996 and the references to the Walkman and tapes made me wonder how updated other pieces of advice were (e.g. the sections on surgical and treatment options). Surely, that would suffice in making my case.
Wrong. The social worker brushed off my feedback and argued that the booklet still had valid points. My friend replied that the language in the booklet was gendered, and the social worker brushed off my friend’s response as well. Given that this was at the end of a long day of tests and that I was hungry and tired, I ended that part of the conversation. As far as I was concerned, I did my due diligence to provide constructive feedback. If my perspective as a patient was going to be dismissed, I would find other ways to process my new diagnosis.
In the days following that hospital visit, thoughts of the booklet, my aunt who had died of breast cancer, my ex-boyfriend’s mom who had died of breast cancer, and my own situation continued to enter my head.
That’s when I decided I needed to open myself up more to community care. In Changing the Conversation, I decided to mention that I had breast cancer toward the end. It wasn’t meant to be the main subject anyway. The next day, I wrote Saying Goodbye to My Body (As I Know It), made breast cancer the central topic of that post, and included photos of myself. When I shared it on my social media, it was some of my friends’ first time to realize that I even had a blog. Traditionally, I don’t include photos of myself, and this time my pictures gave it away.
After I posted that, I ended up getting more support from people I had not spoken to in a long time. It’s not to say that I had hundreds of people lining up to speak with me each day since then, but it’s nice not to tap dance around the topic when I’m a normally transparent person anyway.
Since I was in fourth grade, I was the type of person who felt comfortable having dialogues about topics that people typically found to be taboo. Back then, it was periods, bras, and crushes.
Throughout the years, topics that my social circles consider taboo have evolved.
When I was in junior high, those topics included family abuse and sexual violence as I got closer to my friends. In high school, intimate partner violence was another. By the time I got to college and beyond, friends, partners, and other loved ones were coming to me with personal issues such as having mental health problems, managing financial pressures, being undocumented, dealing with discrimination, handling miscarriages, being blindsided by deaths, and healing (or not) from other traumas.
If I could be there for them, they could be there for me.
Traditionally I haven’t had problems with self-advocating and asking for support; however, I’m not used to asking for this much help.
As much as I value being independent, I have no shame in being interdependent and asking for the community care that I encourage you to seek for yourself.