Rare Disease

A Patient’s Voice: A Firsthand Account of Living with Bipolar Disorder

by Lanmark360


January 15, 2018

Although progress has been made in recent years towards understanding the effects of mental illness, those suffering from these disorders often feel that their circumstances go unrecognized by society, and remain largely misunderstood by their peers, friends, and family. Gabe Howard is a professional public speaker, award-winning writer, and activist who lives with bipolar disorder. Diagnosed in 2003, he has made it his mission to put a human face on mental illness, confronting the fear, discrimination, and stigmatization people living with these illnesses often encounter. Gabe is the recipient of multiple prestigious awards in the health community, and he has worked with several respected advocacy organizations and with hundreds of families and individuals affected by mental illness.I recently spoke with Gabe for an exclusive, in-depth interview on living with bipolar disorder. We delved into numerous aspects of mental health, including early obstacles he encountered in overcoming bipolar disorder, his opinion on the influence pharmaceutical companies yield in the community and the misconceptions people often have about their image, and how caregivers can best treat those living with bipolar disorder.

Firstly, Gabe, I really appreciate you taking the time to speak with us as well as your willingness to share some of your personal experiences from your standpoint of being a patient as well as a leader within the mental health community. We’re really looking forward to getting some educational feedback from you. To start, can you take us through your journey?

Absolutely, Howard. Basically, prior to diagnosis I had no idea that I had any sort of problem. Before I was diagnosed with bipolar disorder 15 years ago, I believed that I had a personality flaw, or, to be blunt, that I was just sucking at life. I didn’t really have any education on mental illness at the time. In my mind, mentally ill people wore straightjackets, behaved violently, and didn’t have jobs. My family and I bought into the pop culture stereotype of mental illness rather than the real version, so my initial diagnosis came as a shock. Once the doctors explained what bipolar disorder was, I certainly recognized the symptoms, at which point, they went over my treatment options. Thus began my epic four-year battle with mental illness. I say epic four-year battle because the early years of battling mental illness included finding the correct medication combination, and developing coping skills.

Understood, very interesting. You mentioned the pop culture stereotype of mental illness, which I imagine was more prominent 15 years ago, yet still exists on some level today. In your opinion, has recent pharmaceutical advertising for drugs that treat different forms of mental illness helped to change that pop culture stereotype of mental illness and given the public a better understanding of what mental illness is? Or do you think it has actually hurt the perception?

It’s a little bit of both. First off, from the way advertising started with mental illness, the disease wasn’t portrayed positively 25 years ago. For the most part, I don’t believe that any of the current marketing is hurting us, however, and this is kind of a backhanded compliment—it’s given people the idea that, “Hey, you’re depressed, why don’t you just go take that med we saw on TV last night and then you’ll be fine?” I wish that more of the advertising would sound more along the lines of, “Hey, mental illness is horrible and even after you take your meds you’re still going to be sick for a while until you adjust and develop coping skills.” That said, on a positive note, the marketing has come a long way to establishing mental illness as a medical illness—it’s not a moral failure, or personality flaw, it’s a disease.
In the last 15 years, more and more people are starting to buy into the idea that this is an illness that requires medical intervention.

Along with the support groups, which I’d imagine are invaluable, what are some other types of resources that are currently, or, due to the reasons you outlined, previously funded or provided by pharmaceutical companies?

Drop-in centers are a great resource that currently lacks funding. A drop-in center is fantastic for mental health patients because when you feel like you are extremely anxious, suicidal, or you just don’t want to be alone, it provides an outlet a safe place to stay and recover. But unfortunately, fewer and fewer drop-in centers are readily available to those who need them, especially in rural areas where they are almost non-existent.

Would you say that the general consensus amongst the mental health community is that they would welcome the support from the pharmaceutical companies and it’s more so the general public that has these misperceptions?

That’s a difficult question to answer, Howard. First off, the mental health community is split in the sense that it’s comprised of two groups—those who have the mental illnesses, like me, and their families. In many cases, those two sides are at odds. “I have the disorder so I want to speak for myself,” versus “My loved one has the disorder and I want to speak for them,” and those two sides stare at each other and say, “Well, whose voice is more important?”

The problem for the patient is, in many cases, the family has more money, and therefore, more power. Patients, due to our circumstances, generally possess many fewer resources. We also have some people that have been very traumatized by the system and the first thing they do is use the pharmaceutical companies as a scapegoat, when really the problem is a lack of funding.

Sometimes I feel that the pharmaceutical companies incur some unfair blame, because many of them do sponsor support groups, but a lot of people view that as their way of creating more customers. Lately, I’ve noticed that the pharmaceutical companies pull back because they don’t want to be viewed as a negative influence. In turn, that hurts patients because it means less money for support groups and classes because, frankly, pharmaceutical companies were the only people that had enough money and skin in the game to care. Let’s face it, mental illness is just not a sexy thing to donate to—we’re not puppies, we’re not children, and we’re not cancer. So, now that our biggest source of revenue feels gun shy, we’ve become very discouraged.

In your case, you have a bipolar disorder with psychosis and you mentioned that you were diagnosed 15 years ago. What was it through your journey that allowed you to achieve success and emerge as a thought leader in the mental health community?

Well, to be honest, I was fortunate enough to have great healthcare benefits and the monetary means to seek help. I was able to see my psychiatrist every four to six weeks with easy access and without any problem. So that’s a big reason, I was able to pay for a lot of care. Unfortunately, that’s not a luxury that many people in the community have.

And in going through that therapy, is that in conjunction with medication?

Yes. Without medication I wouldn’t be in a good place, and it took a long time to find the right combination of five different medications. Each new medication takes about six weeks to reach efficacy, so in administering all five, that’s six weeks in between each one, it takes six months at a minimum to see substantial results.

What’s the average age of typical bipolar diagnosis? Is this something that seems to onset at a later stage or can it be detected early in life? Also, is it genetic?

It is genetic. I’ve been bipolar my entire life. Most people start showing symptoms that are diagnosable between the ages 16-24. I was 25 when I was diagnosed so I definitely hit the high end of it. But I always point out—I could have been diagnosed as early as 18. The reason that I wasn’t diagnosed in my teens is because my family and I couldn’t read the symptoms. It’s not that they weren’t there, we just didn’t recognize them. Mental illness strikes people pretty young. You’re going be hard-pressed to find a 16–24-year-old who’s thinking about whether or not they might be mentally sick. And that makes it harder to reach them.

Do you feel that there is an ample amount of educational information available for newly diagnosed patients?

For the most part, no. While there is helpful information available on the internet, it’s hard to decipher the good information from the misinformation. So, I don’t agree with a lot of the information out there and I would love to receive a grant to create like a booklet for the newly diagnosed patients but, once again, pharmaceutical companies are hesitant to invest in that because they’re afraid of being viewed as having ulterior motives in pushing for patients to take medication, which actually is necessary in the road to recovery.

As the health landscape continues to evolve and transform into more of a wellness model, community hospitals are opening up locations that are almost retail locations in strip malls and everywhere you look there are different types of treatment centers for different diseases. Do you believe that the hospitals and the new health systems that are being formed could serve as a medium to help disseminate mental health information to the public?

I think it would be nice. But first, I think that the public needs to become more concerned with their own health. And I think that requires a cultural shift.

What piece of advice would you give to patients and caregivers of a newly diagnosed teenager with bipolar disorder?

My advice—it’s going to take a long time. The road to recovery isn’t as quick as you think it is but there are little successes along the way that you need to cherish. If you think that you’re going to beat this disease in a month, you’re going to be disappointed. You need to pay attention to the little successes and remember them so that they can get you to the next success. Beating mental illness and managing mental illness is something that’s going to take a long time. But once you do it, and you can, life is great again.

One of the first places that I’m sure these newly diagnosed patients and their families go is websites. What is it that you’d like to see that would be most helpful on a medication’s website for patients and their families?

I wish that the patient’s voice was included more. Health websites do a really good job of publishing the latest research. They do a great job of putting out information from doctors, however, I always say, “If you want a definition of bipolar disorder, just go to WebMD and look it up. If you want to know what it feels like to live with bipolar disorder, I’m your guy.” And doctors, while having our best intentions in mind, tend to talk at us. I think that patients are really distrusting of being talked at. I feel a lot of people suffering from mental illness would feel better if they could hear stories from those who have kind of been there and done that.

So, do you think that there’s validity in creating a close-knit community that brings together people who are living successful lives with bipolar? A community that was previously only available to other patients and not something the public could access.

Yes, I run one of them on Facebook. As you said, people that are at different levels of their recovery can get together and share hints, tips, ideas, successes, setbacks, learn from each other, and receive mutual support.

We touched upon a lot, Gabe, and I have a substantial amount of new insight regarding mental health and the effect bipolar disorder has on people. I think it’s tremendously brave that you agreed to share your story, and your opinions. Is there anything else that we didn’t touch upon that you feel would be beneficial to share with us?

You’re welcome, Howard. It’s been my pleasure. In closing, all I’d like to say is in the mental health space, the people who fare best have agency in their own care. It’s one of those things that people believe that mental illness patients can’t possibly have agency in their own lives and that they need 24/7 care. While there is some validity in that, it’s not cut and dry. In physical health, for example, if somebody is unconscious we make decisions for them because we realize they are unconscious. But as soon as they regain consciousness, we back off. In the mental health space, we’re really good at deciding that people are too sick to make their own decisions but we haven’t defined when they are well enough to make their own decisions. The majority of people aren’t going to need around-the-clock care. They may in the beginning but we have a hard time teaching friends, family, support systems, and society the constraints of when to let go. I think we need to do a much better job of that.


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