By Mark D. Rego, MD
Lived experience is at the core of mental illness. No one truly understands what happens within a psychiatric problem except the person who experienced it.
Other health issues are similar, but not to the same extent. A painful broken bone hurts and different people probably feel a range of pain. But a psychiatric disorder is a disruption of who you are and who you feel yourself to be in the world. This type of understanding must come with a previous appreciation of your identity and your world.
I want to talk about what happens when the deeply personal nature of lived experience is not acknowledged and respected. This, unfortunately, is often part of the experience of mental illness.
Anyone living with mental illness knows the questions you get when you are open about your experience:
“have you tried....... (fill in the gap: some natural remedy, exercise, a way of thinking)?”
Those of us who have experienced this usually feel upset or irritated. But why is this? These folks usually have good intentions. There is no harm meant.
Oddly, the questions do not include inquiries about what happened, what you’ve learned or what has helped. It’s just a quick jump to “Have you tried...” or “I tried...and it really helped me.” The upsetting thing is that these recommendations downgrade or oversimplify what has happened to you. Some exercise, good nutrition or simple change in attitude will straighten things out. Or so goes the advice.
Now, instead of being the one doing the explaining, you suddenly feel like you are on the witness stand. You must defend your position against “why not try it...?” “How will you know unless you try?” So many of us have been in this exact situation.
Imagine you walk into a business meeting you were not invited to. You know the topic of the meeting, but nothing else. So, with no knowledge about this important gathering, you walk in and make a recommendation. “Spend more on...this,” “do more of...that.” This may sound like an exaggerated example, but how it is different from what I am describing?
After you’ve done months or years of personal work with expert clinicians, many people feel no hesitation in skipping all questions and suggesting what you should do. This is where the hurtful lack of respect begins. No matter what type of mental illness or what degree, you’ve been through an intense experience. Summing it up in some simple oversight in your diet or exercise regimens is most likely going to leave you feeling ignored, disregarded and even quite hurt.
Then, you are called to explain. And once you say no, you do not plan to try it; “well you haven’t tried it, so how do you know?” My answer to this is that I haven’t eaten worms, but I somehow know I wouldn’t like them. Which is to say, you do not need to try everything and, in fact, we make up our minds throughout our lives just fine without trying most things.
There is a lack of respect shown here for a complex chapter in your life: your lived experience. In addition, there is often more to it than “just trying to help.” Certain situations make people uncomfortable. When experiences are hard to understand, or things in life that are assumed to be under control (like your mind) turn out not to be, people become anxious. This perpetuates stigma because the “have you tried this...” remark may be coming from a place of judgement or superiority.
Our lived experiences are important, even sacred to us. After going through this, people may be less open to sharing or even guarded. But we cannot let these negative situations become walls. When you let someone know about your mental health lived experience you invite them in. It is an invitation. It says: “Ask me about this, and I will help you understand.”
The larger point is not to judge the people we feel judged by. They are likely well-meaning, but not fully aware of how the existence of mental illness affects them. Lived experience is too important to waste if people are not interested. But if you sense a good intention, some concern or even a spark of interest, open the door. Inform them that you and your clinician can make decisions about your treatment. In the meantime, if they’d like, you can tell them your experience.
Dr. Mark D. Rego is a psychiatrist with 30 years of experience in general practice. His focus was on special groups, such as those resistant to standard treatment, the elderly, people with developmental disabilities and the medically ill. He also teaches psychiatry at Yale and is writing a book about the effects of modern life on mental illness.
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