This article is Part II in the series “Study Asks Bipolar Disorder Patients What They Wish They Knew.” You can find Part I here.
Being diagnosed with bipolar disorder can be difficult. Receiving the diagnosis itself is emotionally challenging. Bipolar disorder is a serious mental illness. While many people lead fairly normal lives with the disorder, others find it completely debilitating. Along with the diagnosis, we are generally told that our moods will fluctuate between mania, depression and euthymia with no predictability. We’re also told that we’ll likely be on medication for the rest of our lives. However, there are plenty of aspects of the disorder about which we are not told. A new study asked people what they wish they knew when they were first diagnosed and what issues they have now.
Thirty-four individuals participated in the survey. They either had bipolar disorder or had a close relative with it. (While this is a relatively low number of participants, the concerns apply to many others.) The researchers took the 369 questions or statements made by the participants and sorted them into 10 broad categories. In Part I we discussed the top five categories: alternatives and adjuncts to pharmacotherapy, pharmacotherapy, provider relations, and understanding BD and support. Here are the other five categories:
6 Health care system navigation
Sample questions from this category included “How do I find the right doctor?” and “How often should bipolar patients talk to their psychiatrist?” These questions need to be answered and answered well. Establishing care with a good psychiatrist is essential to starting effective treatment. This process can be made difficult by insurance limitations and whether or not a patient and psychiatrist can establish a good relationship.
A patient question from this category included “How do you know I’m [this] diagnosis?” Bipolar disorder can be hard to diagnose. It manifests differently in each individual. Then the individual must realize that they need help. Once that is established, people with bipolar disorder are often misdiagnosed. It takes an average of 10 years for people to receive a correct bipolar disorder diagnosis. Because the process can take such a long time, and because the diagnosis is so serious, it’s easy to question whether or not bipolar disorder is the correct diagnosis.
8 BD coping/management
The top question for this category was “How should I manage a manic episode?” Most people with bipolar disorder initially seek help for depression. Because of this, the focus can be on dealing with depression first. Manic episodes also happen less frequently than depressive episodes, so instructions on how to deal with them may be left by the wayside. It is essential that mental health professionals address what happens in mania and how to handle it before the patient’s next manic episode. Having the information beforehand can help people cope better with the situation when it occurs.
9 Social bias and stigma
A sample statement from this category was “I would have asked for more education for all family members including siblings.” Social bias and stigma are prevalent with bipolar disorder. It’s not well-understood by a lot of the public. The more loved ones know about how bipolar disorder actually affects the patient, the more support they can provide and the less bias they should have. Spreading information about bipolar disorder also helps lower stigma.
10 Other (“Big ideas” and “Children”)
There were three top questions in this category. “[Are] side effects different for young children?”/”I want to know how puberty affects medication efficacy,” “Would have asked about alternative treatments for children,” and “What are the early warning signs for bipolar for teenagers?” Diagnosing bipolar disorder in children is difficult as it does not manifest the same way it does in adults. It’s also a diagnosis that can follow a child the rest of their lives. Knowing more about how bipolar disorder affects children can make a difference in their quality of life.
There are more questions and categories surrounding bipolar disorder that can be discussed. These are just the top questions asked by the research participants. If you have any questions regarding bipolar disorder, please contact a mental health professional.
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