A blogging colleague of mine have been talking a little bit about stigma reduction associated with keeping mental illness symptoms associated with the illness itself rather than with the person. For example, the anxiety that I experience is a feature of my bipolar illness rather than some character defect or short-coming of my person. What if we were to try to represent and talk about mental illness symptoms as being features of the illness or diagnosis itself rather than characteristics of the person or the patient? By way of example, we do not think a breast cancer survivor is cancerous. Instead we say she has had cancer and fought it and is still fighting it and/or is in remission. The disease and its symptoms are not synonymous with the patient. In fact with cancer it is the other way around. People always talk about those people who are able to beat the illness cancer — it it not a part of who that person is but rather a fight to fight and to win and to overcome.
So why do we think of mental health symptoms as somehow the failure of the person experiencing the symptoms such as anxiety, depression, PTSD or some form of psychosis? When it’s mental we tend to assign the symptoms to the patient rather than to the illness. This person is anxious. This person is depressed. This person is psychotic. This makes overcoming the stigma of mental illness even tougher.
So what would it look like if we started talking about mental illness symptoms as part of the illness rather than part of the person experiencing them? It might make us more inclined to believe that getting over anxiety or depression or PTSD or psychosis is a matter of the treatment of the illness rather than the integrity of the patient or the person experiencing the symptoms.
What do you think? Do you think mental health patients are asked “to own” their symptoms in a way that cancer patients are not? Do you feel mental health stigma could be reduced if we were to more often disassociate mental health symptoms from the person experiencing them? Could mental illness be considered a challenge to fight and/or to get through like a cancer but not the result of some character defect on the part of the patient? Do we need ways of talking about mental health that include giving credit for actively working to keep symptoms under control and/or having them be in remission for a time? Do we need ways of talking about successes we have had in combatting our mental illness diagnoses even if those troubles still exist for us on some level? What of all this might help to address the stigma of mental illness?
My last blog post referenced those with mental illness and addiction issues under the same umbrella of “behavioral health.” A fellow blogger had the insight to question use of the term “behavioral health” which is used widely in the US but perhaps not elsewhere. She is at: https://mentalhealthathome.org.
The challenge for me is finding a term that includes mental illness and addiction in the same breath. At first glance “behavioral health” does that – include mental health and addiction diagnoses. But as my fellow blogger and friend pointed out “behavioral health” is a weird way of describing mental illness and addiction. The use of the term “behavioral health” seems to imply that all that us mental illness or substance abuse sufferers need to do is change our behavior and all will be well.
Further, the term “behavioral health” does not include the more common understanding that both mental illness and addiction are associated with or caused by a chemical imbalance in the brain. The chemical imbalance is clearly an illness.
While there is room for behavioral change in any illness diagnosis including cancer and heart disease, the idea that a diagnosis can be reversed through behavioral change is missing the point. If I have heart disease, I can change my diet and exercise regime. If I have cancer, I can also adopt a healthier diet and exercise. However, my diagnosis of heart disease or cancer is not defined by my behavior. It is defined by the diagnosis and prognosis of the illness itself. If you are dying of heart disease or cancer, no one says “change your behavior and all will be well.”
So why should we term mental illness and addiction as “behavioral” issues? The key to understanding mental illness and addiction is in understanding there is a chemical malfunction in the brain. Sure, you can mitigate this some with behavioral changes, but that does not mean that mental illness and addiction are explained best by our behaviors or changes to our behaviors.
What are your thoughts on using the term “behavioral health?” Is there another term you choose to use to describe mental illness and addiction?
Has behavioral health always been the red-headed step-child in terms of research and funding levels? If these levels of research and funding followed the severity and reach of mental illness and addiction, might we see the following results? What if behavioral health funding were equal to say cancer funding or heart disease funding or diabetes funding?
For one we would have adequate beds to treat people who needed inpatient care for behavioral health or addiction.
2. For another, we would have adequate funding to develop psychotropic drugs and other interventions without such severe side effects as weight gain and Type II Diabetes onset and memory loss.
3. Additionally, we would be treating war veterans for mental health and addiction impacts that can go untreated.
4. Fourthly, we would have enough resources to fund the Cohort Model discussed previously for people experiencing a significant event or setback.
5. Fifthly, with more co-mingling of people with and without a behavioral health diagnosis we might be able to reduce stigma substantially.
6. Finally and most importantly, by being proactive in our behavioral health and addiction programs in the United States, we may be able to develop some early warning signs among people struggling with depression and/or paranoid thoughts and/or addiction so that we can care for those patients before their symptoms become dire.
For that reason I am revisiting it. With this update, I am trying to understand when people experience memory loss, what kind of memory loss it is and how long it lasts.
Are your memory issues associated with certain episodes of mental illness, meaning they just occur when you are in a depressive state or manic state or the equivalent for you?
Do these memory issues linger after the episode is complete?
In other words is your memory loss temporary during the episode or does the memory loss remain after the episode is complete?
Are you more likely to experience short-term memory impacts or longer term memory impacts?
What coping mechanisms like writing notes, leaving reminders on your phone have you adopted to help manage the memory loss?
Do these mechanisms help you manage the memory loss?
Would you say the memory loss is mild, moderate or significant?
Have you talked this through with your care team / doctor / therapist?
Do you believe the memory loss is a function of the mental illness or the medication or both?
Do you feel covid-19 is a factor in your memory loss?
My memory loss issues are largely short-term — where did I put the car keys or the phone? I also might forget going to a certain restaurant a month or two ago. My memory issues tend to exist during and after episodes and are not episode-specific. The memory loss is there whether I am showing signs of bipolar break-through symptoms or not but are worse for example when my anxiety is high. So far, I have not taken this up with my therapist and my doctor since the problem has been on the mild side. But since the memory issues may be getting more prominent I will likely share with my therapist and my doctor at my next appointments. I am not sure whether the memory loss is medication-specific or illness-specific. I use notes and to-do lists all the time to help manage as well as a few reminders on my phone. I use a hand-written calendar to track appointments and dates. I also use my online calendar to manage appointments as well. I have a bulletin board set up in the kitchen as well to post things that need my attention in the short-term or mostly in the long term. I would say covid-19 is a huge impact since all the days do run together one to the next.
Thanks for sharing your insights on memory loss as you are able.
There was a time in my life where I lived in the same city as my sister. For a period of about 7 years my sister invited me into her home and volunteered to help administer meds when I was in the midst of what I call a mini-break. I feel like this treatment time in her home was instrumental in the prognosis of my illness. I was able to hang out with family even when I was severely ill.
In more recent years, I have come to understand that in Europe home treatments for mental illness are more popular than here in the States. I don’t thoroughly know why that is. But I do know it takes a village.
The progression of my illness since about 2008 using clozapine has basically stopped the occurrence of these mini-breaks but there may be a time when I bump the meds up for a particularly rough day. This is generally in step with my doctor.
The relative stability on clozapine beginning in 2008, however, was preceded by a time of hospitalizations about twice a year after my daughter was born. This was about 2004 to 2008. Prior I had had a period of hospitalizations from 1986 to 1988.
Do you think those who have severe behavioral health concerns/break-through episodes should be treated in the hospital or by a family member who is educated about treatment protocols, medications and the general course of the illness? What do you think about hospitalization versus family care? What are the benefits of each? What are the drawbacks?
This was going to be the cover of my book: My Sojourn through Bipolar Illness – Safety, Society, Stigma and Stability. Thought I’d share it since I am now blogging instead of seeking a publisher. For me the painting captures the feeling of being stigmatized by mental illness as well as the simultaneous goal of keeping your eyes on the prize (the target) despite set-backs big and small.
I am interested in writing about my experiences managing bipolar illness which was diagnosed in 1985 while a Senior at Ivy League College (name not listed). This is almost 35 years ago and also accounts for almost two thirds of my life. I believe that stigma is the primary issue I have had to deal with when managing through this bipolar illness. Similar stigma issues may exist for other mental illness diagnoses. For me the stigma has been at least 50% of the battle. If this story sounds like something you would be interested in hearing more about, please let me know. I am at the juncture now of trying to determine whether to share intimate details about my health and my life in order to get my story out there and to connect with others through story-telling who may share a bipolar diagnosis or know someone who does.
I believe that overcoming stigma is more than half the battle with any mental illness. I believe by telling my story and by connecting to others with similar stories, we will break down the barriers to understanding mental illness and reduce stigma in the process.