Feeling like you're the only one
Why does it seem like people don't get what you're going through?
The New York Times has an intriguing article on the role our sense of smell plays in our lives, something people are taking more notice of given how loss of smell is a symptom of infection by the novel coronavirus.
The thing that struck me most in the piece was an aside:
A University of Warwick researcher noticed something similar 20 years ago, writing that what seemed to unify anosmics was “the expressed feeling that each was the only person in the world to be affected by the condition. This appears to be a direct reflection of the lack of sympathy that anosmics encounter concerning their condition.”
Researchers were noticing the “overwhelming relief at having at last found others who understood what they were going through.” In this case, they’re talking about people who’ve lost their sense of smell.
That sense of relief, though, is familiar to a lot of people who feel like they’re the only one whose life revolves around care work.
I’ve wondered how it is that so many people providing care feel like no one in their life gets it. That they’re the only person they know acting as a caregiver.
Statistically, I know that’s highly unlikely.
There are a lot of people currently providing such a significant amount of care that it meets the government definition of a “caregiver.” There are even more people who’ve held that role at some other point in their life. There are even more people providing care in other, less official feeling, ways.
Of course, there are also millions of professional caregivers who struggle with the emotional demands of the work, often in situations that isolate them from forming connections with coworkers.
So, why is it that they all think they’re the only one who feels like they do?
The unnamed researcher from the University of Warwick offers an interesting potential explanation: that people aren’t offered an appropriate amount of sympathy for the role of caregiver.
How do we demonstrate that we deserve empathy, sympathy, and support?
Is it that people don’t understand? Or is it something more complex?
Why is it that people in our lives, people who likely care about us and have at least some experience providing care, offer so little sympathy?
Perhaps they feel guilty about not providing as much care as they feel they should have in the past.
Perhaps they feel shame about having avoided the role entirely.
Perhaps they find the topic so overwhelming that they refuse to discuss it.
Perhaps they find the need for care too shameful to talk about.
There are so many organizations out there trying to raise awareness about the plight of caregivers. Sure, some people don’t realize there’s a word for it or haven’t conceptualized this role as work.
I get the impression that far more people know there’s a label and don’t think it fits their situation — or simply reject it.
I’ve been told so many times that “I don’t know any caregivers, but…” and then they tell me about how they left their demanding corporate role to take care of their spouse after a life changing diagnosis and that’s how they ended up in their current career.
The role of caregiver is incredibly varied. It can last a few weeks or a lifetime. It can be 24/7 or it can be episodic. It can mean running a home ICU or helping a neighbor with errands and yard work.
The homepage of The Caregiver Space used to say “Only another caregiver can understand…”
I took it down because a lot of caregivers don’t understand each other. Experience in care work does not mean someone will understand your situation. It doesn’t mean they’ll know what to say or be empathetic.
Some studies suggest that people are less empathetic to people who are struggling through experiences similar to our own. We struggled through and rationalized how those experiences shaped who we are today. Thus, expressing empathy is a trigger for difficult emotions from our own past. Providing sympathy when we didn’t get any undermines the idea that our suffering was necessary and important.
When an opportunity to express support arises, we choose to not recognize the cues that support is needed. We ignore their bid and change the topic.
They assume we don’t understand.
Do we think no one gets it because we’re in a less common scenario (none of my friends have a partner who’s on disability in their 30s) or because we’re in a common scenario (everyone has elderly family members, so why am I the only one struggling?)
What’s made you feel alone in your role as a caregiver?
That’s a real question. You can leave a public comment by clicking the button below, answer in our private FB group, or hit ‘reply’ and it’ll go just to me.
I’m not entirely sure what I did last week, beyond make doughnuts for the first time and take some beautiful walks in Toronto’s snowy ravines. Regardless, I did not match people to groups yet.
If you’d like to be popped into a group of other people with caregiving experience to chat and support each other, you can still sign up here.
There is also a great deal of fear on the part of friends and family regarding caregiving. They feel this is something that will affect them sometime in their future and don't have the wherewithal to deal with it. So, they turn away.