Some Musings on Stigma – Transparent and Personal

By Melissa McKinstry, Board Member for the Right Door for Hope, Recovery and Wellness & Serves on Board of Directors for Community Mental Health Association

Following my podcast conducted at the Summer 2024 CMHA Annual Summer Conference, I continue my sharing with this writing. I have been a person served, consumer, client or patients for forty-eight years. At the age of 17 my parents were forced to seek treatment for me when I was thrown out of high school during an episode of mania. Stigma is real and prevalent.

My name is Melissa McKinstry. I am 65 years old, and, according to my medical record, retired, although I have never held a full-time job and have worked mainly as a volunteer. My current volunteer positions include being on the Board at The Right Door in Ionia County, a position I have held for fourteen years or so, Co-chair of the CMHA Legislation and Policy Committee, and a member of its Steering Committee and Board of Directors. I was chair of The Right Door Board for four years. I tell you that because it puts me in a small group: I am also a person served by the public behavioral health system for forty-eight years and counting. Not many persons served have been Board chair, and I am very honored and proud to have been elected by my fellow Board members.

As I mentioned, I have been a person served, consumer, client or patient for forty-eight years. I have been severely mentally ill for fifty years. It was not until I was thrown out of high school during an episode of mania at the age of seventeen that my parents were forced into seeking treatment for me. That was a very long time ago, and I am not going to recount the story here. What I do want to point out is that I never really had a life as, in my thought, a “regular person.” I have virtually always been a mental patient. Those final words sound harsh to contemporary ears, but for most of my life, those words followed my name as PhD, M.D., or J.D. follows the names of various others. Whereas the latter three appellations garner some respect from most people, “mental patient” has quite the opposite effect: apprehension, fear, pity, morbid curiosity, and derision are common reactions from people when they learn that I have a serious mental illness. That is how the average person reacts. People in the medical profession can be even worse, especially if one has a personality disorder listed after one’s name. Doctors often automatically label one as an attention seeker or manipulator, which can result in difficulties obtaining treatment for very real maladies. Stigma is real and prevalent.

That is stigma from without. Stigma also exists within. My identity, after scores of psychiatric hospitalizations, years of day treatment and a lifetime of associating almost exclusively with others who have severe mental illness or our caregivers, is inextricably linked to my diagnoses. It is extremely difficult for me to think of myself as anything else: I have been a mental patient all of my adult life and then some, and I will always be just that. It is ingrained in my mind. Then my colleagues step in. [I actually have colleagues: I was addressed as such in a correspondence.] How do I explain being elected to the Board of The Right Door four times if the other Board members think of me only as a mental patient? [I know my terminology is archaic and unpleasant, perhaps even offensive to many if not most, but those are the words I use to describe myself, a legacy, as it were, of less enlightened times, and by the way,  grating to my ears as well.] My work with the CMHA poses the same internal conflict as does that at The Right Door: other committee and Board members listen to what I say and treat me with respect instead of patronizing me as I expect them to do. The dissonance is almost deafening.

External stigma, the beliefs of others, can harm a person socially and financially, whereas internal stigma, because it is one’s own beliefs, harms one’s very soul. External stigma can be difficult, but internal stigma is crippling. Its effects can be devastating. It darkens one’s dreams for the future, giving one a false sense of having little or no potential for being a useful part of society or leading a fulfilling life. My experience until recently, was the firm belief that I was capable of only the meanest contribution to my community, that all my close relationships would forever be one-sided and billable to Medicaid, and that no one would ever be interested in anything I had to say. I am still not entirely convinced that those things are not true, but I am considering the evidence.

Unfortunately, internal stigma is reinforced by the way serious mental illness is treated. Persons served are segregated from those who treat them, which is necessary, but also from their communities. We tend to be encouraged to socialize amongst ourselves while we attend groups and events at our treatment facilities and go on outings under the supervision of staff during business hours, as well as during our time away from our agency. Until very recently, except for church functions, all of my time was spent with persons served or the staff who serve me. Although I now associate a little bit with people from the church choir of which I have been a member for twenty years or so, I still feel very uncomfortable around them. I don’t feel as if I am one of them: I spend my days at my CMH while they have families and jobs. In my mind, I am oil and they are water. The same is true when it comes to the people I work with on the Board of The Right Door and at the CMHA. I was separated from “regular people” except staff for so many years that I cannot even imagine myself as their equal. Although I do associate with them often now, I always feel as if I am of a lower caste, and I am not comfortable.

If I had my druthers, every person served by the public behavioral health system would be encouraged and aided, if need be, to integrate their self into their community to the greatest extent they are able and to engage in activities outside of the domain of the treatment agency. This would help to reduce both internal and external stigma by decreasing the segregation we currently experience: those of us being treated for serious mental illnesses would be interacting with “regular people” and they would be interacting with us, all in a natural setting. [As a side note, supervised group excursions are not what I consider natural: you do not usually see groups of adults being herded through public places unless they are on a tour of some sort. We, it seems, are forever tourists in our own communities.] I understand that not everyone is able to be left unsupervised, but for those of us who are, please encourage us to do things in our communities so that we can prove to ourselves that we are “regular people,” too.