Sue Robins owns a health-care communications company and is the mother of a young man with Down syndrome. Robins used to blog about caring for her son and his encounters with the health-care system. But that all changed the day she received a diagnosis of breast cancer.
Now Robins blogs about her experience as a cancer patient – one who wears a hospital gown and takes a number from a distracted clerk at the clinic counter. She’s a patient who weeps at the smallest kindnesses shown by staff and at the vulnerability she feels as a person whose life has been turned inside out.
I was interested in how Robins’ experience as a patient is shaping her attitudes towards both health care and the natural care she provides to her family at home. So I called her and we had a long chat.
Thomson: What has your cancer treatment taught you about what constitutes good care?
Robins: I was surprised to learn that the elements of good care in the pediatric disability world are identical to those in the adult cancer world. Fundamental notions like respect, dignity, information sharing and partnership are universal, no matter how old you are. And we need to apply child-friendly practices to adult care because when you are ill or injured, you feel like a child again.
Thomson: Why do you think good care is so difficult to dispense? Are there lessons here for family care?
Robins: I think there’s a notion in the health-care world that if health-care professionals feel empathy for their patients, they will burn out. I believe the opposite is true. Allowing yourself to be human with your patients, to let them get to know you, this builds trust and is the beginning of a relationship. Of course, all caregivers (paid or not) need to ensure they stay in touch with their own feelings or they won’t be able to care for others.
Thomson: How has your cancer diagnosis and treatment changed your caregiver identity?
Robins: Since my cancer diagnosis, I’ve realized that my entire identity was consumed by caregiving. Because I spent all my time ensuring others felt cared for and loved, I had forgotten about caring for and loving myself. I even needed permission from my oncologist to go for a walk! In the hospital setting, I realized that I had no idea how to speak up for myself. I knew how to care for my kids and my husband, but not for myself. I could not hide behind being a mother or caregiver anymore because this was about me.
It was very hard for me to receive care from my family. My daughter, who is 20 and studying nursing, travelled home for my surgery. I felt terribly guilty about disrupting her life and about the worry my cancer caused everyone in my family. But my daughter took charge, helped us read the hospital pamphlets I’d been unable to open and even changed my dressings after my partial mastectomy. The key lesson here was that I needed to learn how to unconditionally love myself and accept that, as Brené Brown says, “I am enough.”
Thomson: Will your care for your son change as a result of your own health-care experience?
Robins: I think I didn’t realize the depth of pain that health care can inflict, and I hope I will talk to him about those realities and feelings now instead of just bribing him to go to the lab to get his blood drawn.
I think I’m less worried about being liked. My friend Isabel taught me this mantra when I was going in for cancer treatments: “You are the queen!” With that idea, I walked into the clinic knowing I deserved to be treated with kindness and with care. I was less apologetic and more direct.
I will take this newfound confidence into my dealings with my son. And I’ve learned to laugh more with my family and with my friends. Laughter is important, too.
Donna Thomson is a caregiver, author and activist. She wrote The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (2014). She is a board director of the Kids Brain Health Network and advises from a family perspective on numerous health research projects. She also teaches families how to advocate for care at The Advocacy School and The Caregiver Network.
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