Taking the blame
Awareness and unsolvable problems we are expected to solve
I spend a lot of time pondering about why care work can be a great source of meaning for some people and a soul sucking life destroyer for others.
One contributing factor to having a care work experience that crushes your self esteem and sense of agency is, ironically, disease awareness campaigns.
It’s easy to understand why people want to warn us about potential problems. Of course you want to warn other people, particularly about the things that have harmed you. You don’t want other people to have to go through the same thing, if they can avoid it.
And of course awareness campaigns urge us to be on the lookout for signs of trouble and get professional help if we need it. It’s hard to imagine what else they might do or how this might be a bad thing.
So why am I arguing that there’s a downside to concept of the awareness campaign? Because it’s a contributor to guilt and caregiver burnout.
Despite all the hugely successful awareness campaigns about the warning signs of medical emergencies like stroke and heart attack, not everyone is treated right away. We miss the warning signs. We can’t convince someone to go to the hospital. We can’t get doctors to take the symptoms seriously. Maybe we did spot the signs and got them treatment, but we blame ourselves for not getting help sooner. Now, instead of their subsequent health decline being an act of god, it’s something we shoulder the blame for.
Let’s say you read an article about how encephalitis is often mis-diagnosed as autism or schizophrenia. Encephalitis is treatable and, with prompt treatment and luck, a full recovery is likely. When someone is mis-diagnosed with an incurable condition and thus never treated for encephalitis, they acquire a lifetime disability that mimics the symptoms of the mis-diagnosis. I think most of us would prefer to know what really happened, even if it contributes to people blaming themselves.
Awareness campaigns about the need for families to protect elders against financial fraud seem like an unquestionable good. Of course it’s good to warn people about phishing campaigns, fake investments, and romance scams, right? Only many of us have had the horrible experience of watching someone we care about — and have financial ties with — fall for a scam even after we’ve told them is a scam.
It’s usually easy enough to get someone to not click on a phishing link or call to verify a questionable invoice. It’s a lot more difficult to crush someone’s dream of entrepreneurial success, financial freedom, and perfect love. It’s not as if we just need to point out the facts and people will walk away from the scam. Plenty of people being conned have no cognitive impairment, so they’re just as capable of seeing the facts of the matter as anyone. In the era of self-managed retirement funds, scammers may be more likely to target seniors, but people of all ages are the victims of ‘pig butchering’ schemes.
When Chris Mancinelli took action to protect his father from a romance scheme, his father sued him. He doesn’t oversee a conservatorship for his father, so it was probably illegal for him to use his POA to do something against his father’s wishes, even if those wishes are to give all of his money to a scam artist. He only took this extreme option as a last resort after working with professionals — from financial advisors to therapists — failed to help.
Just like all those articles about how there’s no scientific evidence that flossing reduces periodontal disease never tell us to stop flossing, I’m not suggesting we end awareness campaigns. They’re obviously a good thing. I would love to see the people planning and carrying out awareness campaigns remember that even something that’s obviously good can have drawbacks.
By only envisioning the upsides of awareness campaigns, we miss opportunities to mitigate potential harms. The way these articles are written often imply that help is available, if only we ask, and that early intervention will lead to a happy ending.
This messaging not only contributes to the guilt so many care workers are plagued with. The messaging that it’s a caregiver’s responsibility to control other people’s behavior feeds toxic family dynamics. It’s one thing to identify the symptoms of a heart attack, it’s another to feel responsible for managing someone else’s chronic illness or incurable condition. The messaging that caregivers should solve the unsolvable leads to feelings of incompetence and helplessness.
It also leads to the very real judgement of others. A lifetime of awareness campaigns urging us to reach out for help and get help for others leaves us all believing that there is help available and it’s easy to get. Thanks to this misconception, people in our community erroneously assume that there were warning signs the caregivers missed and that there was help they didn’t bother to ask for. Instead of the caregiver being on the journey alongside the care recipient, they’re now viewed as being responsible for their trouble.
No wonder so many caregivers say “only another caregiver can understand!” It’s only people who’ve already learned it the hard way who know how hard it is to get help and how inadequate that help often is.
Small tweaks to the messaging can have a big impact. Awareness articles emphasize the warning signs. They tell us frightening statistics about the dire impact of this problem. They motivate us by sharing the best case scenarios of successful treatment and the worst case scenarios without. Stories with a big emotional impact are the ones we remember.
The messaging about hoarding is generally different from that coming from typical awareness campaigns. They’re a little more realistic about the outcome: that treatment is lifelong, not always covered by insurance, and requires the cooperation of the person hoarding. There is rarely the message that someone would have been fine if only their family had gotten them help in time.
Stories that provide realistic expectations for the accessibility of treatment and potential long-term outcomes aren’t as motivating as simple tales with happy endings. Awareness campaigns rarely include potential treatment options, their efficacy, and whether they’re covered by most insurance plans. They could. It could change the way the community views caregivers and the way caregivers view themselves.
