Last week I heard this story on the radio (you can read it here in LAist) here in Southern California about anosognosia in mental illness. It both made me both happy and sad to see attention being given to this topic of lack of awareness of one’s mental illnesses (aka: brain illnesses). I felt happy that this important and little known aspect of so many brain illnesses was getting mainstream coverage that is so badly needed. And I felt sad listening to the all too common heart wrenching stories of families desperately trying to get a loved one the care they need only to be gaslit by both their loved ones and the health care providers who are typically untrained and therefore unaware of this lack of awareness of one’s illness.
Full disclaimer here on my sense of logic that I’m going into below, I got a very low grade in the logic course I took in college. The theorems hurt my brain and made no sense. That being said, I am typically a logical thinker from what folks tell me.
It seems that if a family member sees that a loved one is in distress, cannot perform the functions of life and they’re doing harm to themselves that health care providers would listen to them and help them find help for the loved one. Logical?
From what I’ve observed both personally and professionally over and over for more than 20 years is that listening to the family caregivers, gaining an accurate diagnosis and treatment plan is not happening due in part to anosognosia on the part of the patient who cannot see that they are severely ill. The lack of training of health care providers on anosognosia in brain illnesses (aka: mental illnesses) is perpetuating the problems.
Therefore, the patient remains ill and the family is further gaslighted and becomes more anxious.
So often moms especially, will tell me that they were calm, rational people. And then they watched their child’s physical and mental health deteriorate. Next they attempt to rationalize with them and get them to seek help and only meet with resistance, anger and gaslighting. Then they try to appeal to health care providers who without the training on this lack of awareness and/or lack of training on eating disorders in general will say that the child is just fine and that the mom is being overly reactionary and anxious. Very often moms are told that they are enmeshed, overly protective, in need of treatment for anxiety themselves and should back off. Also, see sexism and misogyny in health care data.
Do you see where I’m going? No one is listening to these moms and they’re becoming anxious, overly involved and protective BECAUSE everyone is ignoring what they are saying when they are the ones who have actually identified the issue. As humans we get a little wonky when we’re not being listened to as well as being told that what we are clearly seeing doesn’t exist.
If you’re not a mother it may be hard to understand the innate maternal protection that mothers all have that helps us keep our kids safe. Much like the animals, mothers have an instinct to protect their young. When we see a mother bear ripping a human to shreds because they got between them and their cub, we don’t pathologize her. We say, “Yes, that mother bear was simply protecting her cubs.” With human mothers who are protecting children and have to lash out because harm is being done, we’re pathologized and told to step aside. This is not okay.
Why am I still writing about this in 2022? Because: it is still happening! Though earlier diagnosis rates have definitely improved (finally), many people still are not getting diagnosed right away, mothers are still not being listened to by all providers (this too has improved) and people are going untreated while their primary caregivers (typically the moms) are having their own physical and psychological health problems because they’re watching their loved one slowly deteriorate and they’re living with the constant fears and frustrations. The family caregiver’s health matters too by the way. Even though they are not the “identified patient” they are humans who need help and support. Education of clinicians can stop this conflation of correlation and causation.
Why is it STILL happening? In my humble opinion these four factors play a big role:
- Lack of awareness and training in the health care professions on eating disorders and mental illnesses in general.
- Lack of training on anosognosia in mental illnesses.
- Misogyny and sexism in health care (toward female providers, parents & patients)
- Long standing albeit incorrect theory that cold controlling mothers cause eating disorders.
Kudos to those health care professionals who have and are changing this horrible history. It is wonderful to see providers who have gotten trained, who include and respect the parents, and who are seeing patients gain health. It is a breath of fresh air to now be finally seeing family caregivers (especially those of young adolescents) getting quick diagnoses, treatment, respect and inclusion in the team. Finally in the last few years, I’m seeing families who are experiencing a treatment time frame of 2 years or less and having their kids back! This is a dramatic improvement over the typical 5-7 year treatment length. I’m so grateful to my colleagues who respect the value of including and respecting family caregivers and who give them the resources and support that is needed.
We can do this, we can get these kind of outcomes for older adolescents and young adults. I posit (to use one of the few “Logic” terms I recall) that if every single parent, partner, sibling and other family caregivers were listened to and taken seriously, we could see shortened length of treatment and improved outcomes for the patients as well as improved physical and psychological health for the family caregivers.
Family caregivers’ health and wellbeing matters too. When mothers are pathologized and sidelined, harm is done. Please, do no harm. If you’re ready to gain insight into the family caregiver experience, I invite you to get my book on family stories of living with eating disorders for yourself or your health care provider. You can buy, “Just Tell Her To Stop: Family Stories of Eating Disorders” here. Second edition coming soon.