Bipolar disorder is complicated. It does not simply consist of moods going up and down. These episodes are intense and they come with several other symptoms and behaviors. During mania you can expect a short attention span, grandiosity, lack of sleep and risky behavior, among other symptoms. With depression it’s loss of interest, depressed mood, weight changes, sleep disturbance, feelings of worthlessness and even suicidal thoughts or actions. All of this can seem overwhelming when first diagnosed, and the diagnosis comes with many other concerns. A new study asked people with bipolar disorder what they wish they knew when they were first diagnosed and what their concerns are now.

The study was led by Anastasiya Nestsiarovich of the Center for Global Health at the University of New Mexico and published in the journal Bipolar Disorders. The objective of the study was to communicate with people who either have bipolar disorder or have a relative with bipolar disorder about illness management with the goal to find where resources can make the largest impact.

They interviewed 34 individuals, 24 with bipolar disorder and 11 with close family members. They asked them to write down any questions or statements they had regarding the disorder on a sticky note and then place it on a board. In total there were 369 questions or statements. These items were then categorized into 10 broad themes. The first five categories consisted of:

1 Alternatives and adjuncts to pharmacotherapy
An example of a question in this category was “What are the risks of takings medications or not?” This category brings other treatments for bipolar disorder into question. Despite taking medications, many people still have symptoms and mood episodes or don’t benefit from medication at all. That’s when complementary treatments like exercise, nutrition and mindfulness come into question. All of these things have been shown to help ease symptoms at least a little, so wondering about alternative or complementary treatments is a valid question.

2 Pharmacotherapy
Example questions included “Medications: how do you get the right cocktail?” and “What are the safest medications to take first?” Medication for bipolar disorder is as complicated as the disorder itself. There are hundreds of possible medication combinations all with different benefits and side effects. What works well for one person may not be tolerable for another. Finding the right medication regimen can be a long, arduous process.

3 Provider relations
The question aimed at the doctor was “How can you better understand my condition and what information will help you in ‘fine tuning’ my treatment?” Just like finding the right medication can be difficult, finding the right provider can be as well. If a person with bipolar disorder has a poor relationship with their doctor, it can lead to negative outcomes including the patient’s decision of whether or not they follow treatment guidelines set up by their doctor.

4 Understanding BD
One statement made about the disorder itself was “Would have been good to know severity of symptoms, especially dangers.” One question was “What will happen to me?” Bipolar disorder can be frightening. You never know what risky behavior you might end up with whether it’s spending yourself into massive debt, having an affair due to hypersexuality or planning a suicide. The true severity of the disorder may be overlooked when explaining it to a patient directly following diagnosis.

5 Support
The main comment was this: “I wish they would’ve shown me where to find support when suicidal.” Suicide is a major concern in bipolar disorder. As many as one in five people with the disorder die by suicide. More than half have suicidal ideation. This is something else you may not learn at first, but it is vital that people know where to get help. If you are having thoughts of suicide or are in crisis, you can call the National Suicide Prevention Lifeline at 1-800-273-8255. You can also text CONNECT to 741741 to talk to someone via text. Suicide is preventable, we just need to inform people on how to get help when they need it before it’s too late.

 

These are only five of the 10 categories identified as concerns of people with bipolar disorder. In Part II you can find the other five categories.

 

 

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Image credit: Jesse Millan