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Barry Lee / @barryleeart

Being Involved in Mental Health and Chronic Illness Treatment Plans

July 10th is Chronic Disease Day

by Katie Elizabeth

I was thirteen years old when I first went to therapy, and I have been going for more than half my life. I remember during that first session when the therapist told me that she thought I was doing great. I found out later that she told my parents she was worried about me. I was furious. Lies were told, and my trust was broken. I didn’t feel like I was involved in my process at all. 

I understand now that this therapist was the first to teach me a lesson that I have been learning ever since. The lesson that no one wants to involve those of us within the mental illness community in our very own treatment plans. 

I feel it is only recently that the value of lived experience and peer support is becoming recognized and valued in the U.S. Lived experience can often be overlooked in comparison to textbook learning. Suicide prevention and awareness walks aren’t geared toward people with lived experience but are targeted at families and friends. There are not many spaces centering on the actual experiences of people with mental illness. 

There is a saying within the disability rights community: “Nothing about us, without us.” Meaning, speak and act with us centered in the work and conversations. Don’t speak over us because of the ableist assumptions that we are either “incapable” or “unaware” of what is going on. 

Very recently thousands of people have spoken up for #FreeBritney as news of Britney Spears' conservatorship plastered the internet, but so often this same internet will support coerced psychiatric treatment. People think a pop star should have her rights, but oftentimes those who are perceived as “more disabled” are forced into treatment without a second thought.

I constantly worry about disclosing my history to providers for fear of stigma and biases affecting the care I receive.

In the media and on social networking sites, mental illness is blamed for mass shootings, mass hate, and racism, but racism is not a disease. Through bad media takes, movie tropes, and misinformed guesses, people with mental illnesses have been pegged at the very least unmotivated, and at the worst, dangerous. 

Due to these stigmas and misconceptions, I have lived in fear of being forced into a mental health facility because someone else gets to decide if I am dangerous. This discrimination against mental illness assumes that we are dangerous, out of touch with reality, and dysregulated. 

There are always choices to be involved in, but they assume before involving us. No human deserves to have their rights taken away because an assumption is made. 

These assumptions are also made the moment a medical care provider gets a hold of my records. Numerous times I have been treated respectfully until my medical chart is received. Then, I am asked a lot of questions about ‘how I am feeling.’ 

My neurologist screens me for depression and makes sure I am still seeing my therapist, even when it is irrelevant to my visit. I have seen doctors who have only charted my mental illness diagnosis and not my physical ones.

No human deserves to have their rights taken away because an assumption is made.

A former primary care physician of mine used to be in charge of my psychiatric medication while I was searching for a new mental health provider. One time, I went to see him for an assessment of my traumatic brain injury and was told to take anti-anxiety medication. Rather than assessing me properly, they told me that anti-anxiety medication would “help me feel much better about my situation.” I wish I could say this was an isolated incident, but it is not the only time I was offered anti-anxiety medication or antidepressants for physical illnesses.

The stigma surrounding mental illness often causes physical illnesses to go untreated. One time I walked into a cardiologist's office and told him I had POTS (Postural Orthostatic Tachycardia Syndrome) because I was confident in my self-diagnosis. I was asked what I was doing to treat it and I was ready to fight him. I had my guard up, but it turns out I didn’t have to. I was believed and diagnosed that day; though this is not the case for many...  

My story ended up being a positive one. I switched providers and not only did the doctor give me exceptional care, but the receptionist at the office rallied around me to help me find the care I needed. I was listened to, given informed information, and spoken to like I knew what was going on with my body best. It’s important to keep searching for a provider that listens to you and believes you.

A mental illness diagnosis follows a person. It can make other medical care much harder. I constantly worry about disclosing my history to providers for fear of stigma and biases affecting the care I receive. How do you trust the process when the process does not trust you? 

How do we get medical staff (or anyone) to see past the stigma of a mental illness diagnosis? In my opinion, it’s by bringing attention to the fact that they aren’t. While they might think we’re just “attention-seeking”, we show them that attention is a good thing. When we bring attention to ourselves, when we start speaking the truth, there is no longer room for lies; there is no longer room for stigma to make us appear as anything but powerful. As author and patriarchy disruptor, Mona Eltahawy says, “It is powerful and dangerous to be an attention whore. And so we must be attention whores. Let’s blow their fucking minds.”

If we are already seen as dangerous, may we be powerful and dangerous enough to finally take down mental illness stigma.

If you are in crisis or are experiencing difficult or suicidal thoughts, call the National Suicide Hotline at 1-800-273 TALK (8255) or you can also text NAMI to 741-741 to be connected to a free, trained crisis counselor on the Crisis Text Line.

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