Paid or unpaid, caregivers are never supposed to get sick,
right? But sometimes we do. Sue Robins owns a health care communications company and she also happens to be 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 is 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 Sue 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.
ME: What has your cancer treatment taught
you about what constitutes good care?
SUE R: 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.
ME: Why do you think good care is so
difficult to dispense? Are there lessons here for family care?
SUE R: I think there’s a notion in the
health care world that if healthcare 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.
ME: How has your cancer diagnosis and
treatment changed your caregiver identity?
SUE R: 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”.
Q: Will your care for your son change as a
result of your own health care experience?
SUE R: 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.
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