Brain illness and stigma

Editor’s Note: The author, Catherine Paavola, is a former board member of Copper Country Mental Health.

Recently in our community, there has been a lot of attention paid to the growing need for more clinicians and hospitals equipped to meet the need of those suffering “brain health” crisis, and the problem of the stigma that acts as a roadblock to seeking “brain health” care.  In my opinion, as a mother of a 36-year-old son who has struggled for at least 13 years with a serious “brain illness”, my first suggestion is to stop using the word “mental”! Start referring to the actual organ that is in question, the brain!

Photo by Robina Weermeijer on Unsplash

Every year about 1 in 4 people will be diagnosed with a brain illness. When hard to treat illnesses like schizophrenia, bipolar disorder, debilitating PTSD, or depression occur after the age of 21, but before one finishes college or establishes sufficient Social Security earnings history, our loved ones are ineligible for Social Security Disability. Once ill, they suffer the domino effects of losing jobs, healthcare, and housing. 

Since housing is limited and seldom offered with community treatment programs, it should not be surprising that approximately 25% of our homeless population suffer from serious brain illnesses. In addition, without treatment, their altered behavior (urinating in public, nudity, stealing food, blankets, or clothes, begging, loud ranting that disturbs the peace, and hurling obscenities and feces at people) often lead them to be arrested for minor offenses. So again, no surprise that people with untreated brain illnesses represent 25% of prison inmates also!

Drug use among people with serious brain illnesses is a common practice in order for them to feel “normal”. Most don’t like psychotropic medications because of the many troubling side effects. Within our healthy population, drug abuse occurs at about 15%. Within the population of those suffering from serious brain illness that number exceeds 70%.

Most families trying to help their ill family member must walk a tightrope of rules that limit how much they can help. To get around the rule limiting how much financial aid can be received, most families will simply fill the need and say nothing (not report it) in the form of food, clothing, heat, electricity, water, transportation, laundry-mat, glasses/contacts, dental care, and more. Otherwise, it can mean the loss of what very little state Medicaid their loved one gets.

Our son was fortunate that his earning record qualified him for Social Security Disability. He gets $756 monthly. In addition, he receives a food card that helps him afford enough good food. We are all very grateful for these benefits, as they are really life-altering for him.

In addition, we helped our son fix up an old falling down dilapidated house so that he wouldn’t be homeless. After taking off the condemned part, the house went from 1660 sq. ft. of living space down to 990. Yes, It does have new metal roofing, and 2 sides of it have siding. None of the walls are dry-walled. The floors consist of plywood, or old floorboard and planks. Windows and doors are from the resale shops. His toilet is in unlit closet space with an old laundry tub. His shower is in another unlit closet. 

Imagine our shock when we recently got a notice of assessment from Portage Twp informing us that the taxable value is now increased by $31,988 resulting in an increase of $745 to this year’s tax bill!

Thankfully, our son qualifies for tax forgiveness due to poverty. Unfortunately, every year he must re-apply. That means he must acquire and fill out the forms; travel to where the board meets with others in the community in attendance; get up when it is his turn and explain why he believes he qualifies for a poverty exemption for his taxes. This rule applies to everyone including disabled veterans (who should always be treated as heroes).

In my opinion, and one shared by many permanently disabled citizens (physically, medically, or due to a brain illness), this is a humiliating, degrading experience. If an individual has a permanent disability they should not be required to repeat this public stigmatizing, devaluing process every single year. 

Returning to the treatment of brain illnesses, the failure to have national Medicaid qualifications and standards of available benefits is a roadblock to continuity of care. When families move from state to state they frequently encounter a change in available benefits and care.

Last, but not least: all the effective medications, treatments, and therapies for serious brain illnesses are doomed to failure as a result of confidentiality policies! Those people suffering from the worst brain illnesses do not want treatment because they are most often unaware of their illness, and frequently flee treatment programs they resent!

Thankfully, there is supposedly a register of those people who have a history of being a danger to themselves or others that would prevent them from obtaining a firearm. Beyond that, existing laws make it illegal for treatment agencies to share any information about a patient’s health history. Indeed, since our son has been hospitalized numerous times, I have always called the treatment hospital, and after they would refuse to confirm or deny he had been admitted, insisted that they take down my information about his illness or previous hospitalizations and share it with staff.

My message to policymakers at every level (local, state, and nationally) is that the failure to have national Medicare/Medicaid requirements for treatment coverage and the existing confidentiality laws works against continuity of care for those suffering from brain illnesses. It is like reinventing the wheel for every new car, and the most fiscally wasteful policy one can imagine! Every hospitalization becomes the first, without the benefit of past success or failure. This is especially true and devastating for those consumers who may become "a danger to themselves or others" and their families who continually worry about their whereabouts; if they are safe; or if they are alive or dead.

I seek these policy changes because I am 74 and want to know that my son will continue to receive effective treatment after I am gone.

Please bring about that needed change!

Catherine Paavola