The Importance of Being Your Own Mental Health Advocate

A young woman makes an appointment with her local hospital’s behavioral health unit and is seen by a psychiatric nurse. She explains that she has been having uncontrollable anxiety, severe depression, bouts of irritability, anger and thoughts of suicide. After a 20 minute chat, she leaves the office with a diagnosis of bipolar disorder and prescriptions for two medications.

What the young woman doesn’t know is that she never received a thorough psychological evaluation and therefore has been misdiagnosed. She continues to deteriorate for two years until she learns from another mental health professional that her initial consultation was incompetently given. Because of that ineptitude, the initial evaluator never learned that a month before this woman began experiencing symptoms, she had been knocked unconscious by her boyfriend in a drunken rage.

Had a thorough evaluation taken place, this young woman would have received the correct diagnosis of post-traumatic stress disorder (PTSD) and would have been given proper treatment.

Whenever a mistake is made, especially something as detrimental as a misdiagnosis, our natural reaction is to figure out who to blame. But when it comes to our mental health, we need to partner with our doctors instead of accepting whatever is told to us. We tend to place doctors and health care practitioners on pedestals, forgetting that they too, are human and prone to error and incompetence. Because of this, it is in our best interest to become our own advocates.

As clinical psychologist Dr. Caroline Fleck puts it, “Unfortunately, the field of psychology is far behind the field of medicine when it comes to assessment and diagnosis. Mental health diagnoses are typically determined through self-report (the client describes their symptoms) and observation (the therapist observes a client’s mood, presentation, attention-span, etc.), rather than physiological data like blood tests or brain scans.”

Knowing this, it’s no wonder there are so many of us walking around with misdiagnoses. What can we do? How can we strike a balance between being a passive patient and an armchair physician?

Research on the relationship between doctor-patient communication concludes that the ideal relationship has to be like a meeting of two experts. In an ideal situation, rather than that of an authority and subordinate relationship, the patient practices self-advocacy and is encouraged by their doctor to do so. It may not feel like it, but you know your body and mind better than anyone else.

A good first step is writing a list of your symptoms or keeping a journal and bringing it with you to your appointments. Getting it out on paper can help organize your thoughts. Adding to that list as things develop or when you discover new background information, can give you and your doctor a better sense of direction.

This is especially helpful with mental health struggles, as it often is so difficult to try and communicate what’s wrong with your mind when it is precisely your mind that is giving you grief in the first place. One patient at first could only describe the onset of her mental health issues as a “parasite that had taken over my brain.” After some daily journaling and making lists of her symptoms, she found it became easier to express her feelings to her doctor and was then able to develop a partnership that enabled her eventual healing.

Here are some other key points to keep in mind as you travel on your journey toward well-being:

1. Knowledge is power.
Do some research on your symptoms and any diagnoses you may receive. Look up any disorders that may mimic your diagnosis. Bring any concerns to your mental health practitioner. This isn’t about questioning your doctor’s credentials, but rather becoming an active participant in your healing. Remember, this is a partnership! Also, always consider the mind-body connection and get a checkup from your general practitioner to rule out any underlying physical issues that may be causing your distress. Keep in mind that diagnosing mental health issues may not be as cut and dry as some physical issues may seem. In this respect, there is more room for error, so it is important to keep track of your progress and speak up when you feel something isn’t right.

2. Know what to expect.
Prepare for your visit. Do your research and find out about other mental health practices as well as the experiences of family and friends who may have been treated for mental health issues. This will give you an idea of what to expect and alert you if something seems amiss.

3. It takes a village.
Develop your team. It can feel near impossible to get in to see one psychologist, let alone two. Do your best to expand your outreach when it comes to communicating your mental health concerns. Do you have a family member who has a mental illness who would be willing to share their experience? Do you have a friend who is a therapist and could give some advice? What about a trusted partner or loved one who can help you keep track of any changes in moods or symptoms? Perhaps a nonprofit mental health agency that you could call and ask about your diagnosis? Expand your knowledge by expanding your team.

As time goes on, we are learning more about our minds and the disorders that can affect them. Because of the stigma surrounding mental illness,  what we know and don’t know about mental health is continuing to change every day. Be patient with yourself. Continue to self-advocate and have faith that you will eventually find the peace that you deserve.