A Patient’s Guide to Talking Honestly About Bipolar I Treatment

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For many people living with bipolar I disorder (BD-I), finding the right medication can be a long and deeply personal process. Treatments may change over time as symptoms evolve, side effects emerge or life circumstances shift. Yet despite how common medication switching is, many patients struggle to speak openly about what isn’t working — often out of fear of stigma, judgment or disappointing their provider.

Andrew Smith, known as “Smitty,” has lived that reality. After years of medication changes and difficult side effects, he learned that stability doesn’t come from staying quiet — it comes from advocating for yourself, even when it feels uncomfortable. Through trial and error, honest conversations, and support from his care team and family, Smitty found a regimen that has helped him maintain stability for more than three years.

In this conversation, Smitty shares what he’s learned about speaking up, tracking day-to-day experiences, and reframing fear as courage. His story highlights why patient voices, and real-life goals, must be central to treatment decisions in BD-I disorder.

Many people with BD-I switch medications multiple times. From your experience as a patient, why is it so important to have open, ongoing conversations with your doctor about whether a treatment is truly working?

Andrew “Smitty” Smith: I tell my doctor about how I feel on the treatment and, if needed, he will make a change. I advocated to my psychiatrist to try Lybalvi (olanzapine and samidorphan), and I have been on the same regimen for about 3 1/2 years now.

It is vital to communicate how well your medication regimen is working at each visit. Sometimes, I write down or type that information into my phone. We had to go through many med changes to get to my current regimen. It wasn’t easy. Usually, we made a change based on efficacy or lack of efficacy. Sometimes it was a dosage adjustment. For instance, I was on lithium for a few years. It is the equivalent of a pharmaceutical lobotomy. I just went through the motions. We made a change, and I was able to function better with fewer side effects.

Patients sometimes stop or skip doses because of side effects or daily life challenges. From a patient perspective, why do you think talking openly about missed doses can uncover concerns that might otherwise go unspoken?

AS: Generally, I am compliant with medication. I’ve been dealing with BD-I long enough to know that skipping or missing doses can lead to a most unpleasant situation. My wife doesn’t monitor my medications. I keep a pill box. I had a lot of side effects on lithium, so I told my doctor that I was not taking it any longer. However, I told him before I quit taking it. Providers’ time is so precious today due to compliance with regulations and documentation. They don’t like to slow down. I would say try to find a provider who will listen long enough and allow them to make an informed recommendation. Be concise because they have a lot of demands placed on them from lots of sources.

“How are you feeling day-to-day?” sounds simple, but why has this question been so important for you in figuring out whether treatment supports your real-life goals — not just symptom control?

AS: I feel OK if I am sleeping well. My wife does monitor that. I still feel like I have a weight on me at times. I have more good days than bad. I gained a lot of weight on one of my medications. My doctor and I accepted it because I was more stable. Ultimately, we switched to a different mood stabilizer and I was able to lose 130 pounds over 3 1/2 years. It wasn’t overnight, but I didn’t feel so burdened about my weight. I’m hoping to lose about 30 more pounds.
Asking “How are you feeling day-to-day?” is important because that opens the conversation to determine whether the treatment allows me to be present with my family, enjoy hobbies and feel comfortable in my own skin. These details will determine if the treatment plan is really working.

What fears or misconceptions made it harder for you to be honest about side effects or when a medication wasn’t helping?

AS: I have a strong desire to make people happy. I will tolerate misery to keep certain people happy. My doctor was one of those people. While I was on lithium, I couldn’t communicate to him that I was miserable. Finally, I just told him that I wasn’t going to take it any longer. He prescribed another mood stabilizer that worked better. I had a potentially life-threatening side effect, though. We were both undeterred and found a combination that worked well with fewer side effects. My wife has his number. If she calls him, he drops everything and speaks to her about what is going on and makes any necessary changes.

What practical advice would you give to patients who want to start these conversations but worry about stigma, judgment or disappointing their health care provider?

AS: I spent years sidelined by the very fears you mentioned. I was trying to work at a very demanding job with very high expectations. I was afraid of everything. I read all these quotes about fear, like, “There is nothing to fear but fear itself.” I looked up memes on fear. It occurred to me that I was looking at this from the wrong perspective. I needed to look at it from the perspective of courage. I found that courage is taking action or having difficult conversations with your providers. I take a list of symptoms and side effects. In the South we have a saying: “You can bow up or bow out.” Name your fear before you tell the provider. For example, “I am really afraid to tell you this, but something is making me drool.” That was the last conversation I had with my doctor. Act even though you’re afraid and use courage to propel you to new heights.

Based on your experiences, what can clinicians do to help create a safe space where patients feel comfortable being honest and involved in shared decision-making, especially after multiple medication changes?

AS: I was a pharmaceutical representative calling on psychiatrists for 23 years. One of the doctors I called on had a one-sheet form that each patient filled out at each visit. It asked the questions that she needed answers to and was included in each patient’s chart. That is an ideal way for me. With BD-I, there is so much fear and stigma, many patients are afraid to voice concerns or problems. Make sure the patient knows that you aren’t going to judge and that you and your office are safe. BD-I is a challenging disorder to treat. Be sure that your patients know you are their advocate.