When no one asks how you're doing as a caregiver
That brought up a lot of emotions, including feelings of anger and guilt.
I needed to be seen. I needed to feel that my feelings are legit.- Sara Shearkhani
Sara felt angry at feeling invisible; at no one asking her how she was doing; at doctors dismissing her presence.
And then she felt guilty about feeling angry. Because, after all, she wasn't the patient.
"I needed to be seen. I needed to feel that my feelings are legit. And I was tired. And I was devastated. I was angry and I wanted the world to see that."
Sara says it isn't healthy to hide feelings of anger and resentment and guilt that can come with the role of a caregiver.
"When nobody talks about it you feel that it's only you and you are failing in your marriage or in helping the patient…[T]he relationship has changed. This is a new role that we're taking on and we don't know how to deal with it."
Out of this experience, Sara met other caregivers and started a support group. She also switched her academic area of study to health and caregiving.
She says she now realizes this is both of their stories. It is her husband's story and her story.
Sara's husband is in good health now but his tumor is still there.
"It's scary. Does it mean that I have to pause my life again?...And I think about my husband. What about him?...The difference [if I have to be a caregiver again] is that now I know the journey...Now I have a network of support that I've built."