Source: Credit: Jody Domingue

“I’ll be with you through it all.”

— “Jenny” by Nothing More

The medical community has increasingly recognized that mental illness can be just as devastating to an individual as physical illness, with substantial risk for suffering, loss of functioning and even loss of life.

Yet, even as we continue to learn more about the prevention and treatment of mental illness among individuals, little is discussed about one of the main ways that mental illness causes suffering; namely, its effect on the family.

And now, Jonny Hawkins of the band Nothing More is bravely sharing his family’s story of coping with mental illness with the new song and video “Jenny” and is collaborating with charitable organizations to raise awareness for mental health issues with the #IKnowJenny campaign.

Through his efforts, Hawkins is making a clear statement: We need to end the stigma of mental illness and start treating individuals with mental illness and their families with the same kindness that we show people and families with physical illness.

In my interview, Hawkins described how they discovered that his sister suffered from bipolar disorder. “At first, she was just diagnosed with and later diagnosed with ,” he said. “And as she got older, it was diagnosed as bipolar. She started having some very intense — very, very up and very down.”

is a mental illness marked by “manic” episodes, in which an individual can be “high” or overly confident or agitated for days at a time. As individuals with bipolar experience “highs,” they may also experience extreme “lows” of . Bipolar disorder is often accompanied by risky and impulsive behavior, such as and dependence.

Hawkins described how his sister’s drug use complicated the situation. “We thought her behavior was drug-related. At times, it was a little murky, because she was doing drugs, but then there was times when she wasn’t, and she was just completely manic. Sometimes, she seemed like she was completely out of her mind on something,” he said.

Hawkins went on to explain the difficulty of treating his sister’s of mental illness and drug addiction. “If she went to a rehab facility, they didn’t seem to really understand the full picture or cater to her problem, which was much more complicated than just drug addiction,” he said. “It’s like the chicken or the egg thing, where the drugs may cause some issues. But I find that talking to a lot of people who have been addicted to drugs, there was something that was off that initially attracted them [to drugs].”

There is evidence that bipolar disorder causes substantial on the family, and this stress can often result in poorer family functioning. One study compared the family functioning of 58 families of bipolar adolescents to national norms of families without a child with mental illness. Results showed that families with a bipolar child had higher levels of conflict and lower levels of cohesion and adaptability.

Hawkins described how this stress manifested in his family. “It seemed to escalate over time, and it was a slow trickle at first of, I guess, dysfunction or fights in the house. But what I can remember vividly growing up was that more and more times I’d wake up to screaming fights between my mom and my sister, Jenna,” he said. “All go through a rebellious phase, and it’s not really uncommon that they start to get into fights more frequently with their parents. But the nature of it and how it escalated seemed to get out of hand with my sister. Over time, it became clear that it wasn’t just rebellion or that natural urge of a teenager to pull away from your parents, be independent and do your own thing.”

Conversely, just as the presence of bipolar disorder can result in increased family stress and poor family functioning, research suggests that family environment predicts outcome. There is a long history of research demonstrating that family environment, particularly the presence of an environment that is critical towards the patient, is associated with higher levels of relapse for the individual with mental illness such as bipolar disorder.

In recognition of both the effects of bipolar on the family and the effects of family functioning on the course of bipolar disorder, while is generally considered the first-line treatment for bipolar disorder, research has investigated the effect of adding to medication in order to improve clinical outcomes.

For example, one randomized, controlled study of 101 bipolar patients compared those assigned to family and pharmacotherapy to a less intensive intervention and pharmacotherapy. Family therapy consisted of 21 sessions of psychoeducation, communication training and problem-solving skills training. Over a two-year follow-up, patients in family therapy had fewer , reduction in mood-disorder symptoms and lower medication adherence, as compared with those in the less-intensive intervention.

Hawkins talked about both the family support as well as the medication aspects of his sister’s treatment. “There are two sides of this,” he said. “In my mind, I’ve separated it into the relationship side, where you’re not seeking to fix anything. You’re just seeking to let that person know that you are there for them and love them. And that to me is one half of it. And the other half is actually trying to fix the problem, or at least cope with it. I think both sides were broken for a long time.”

Unfortunately, treatment adherence can be a significant problem with bipolar individuals, with some studies showing that 50 percent of patients are not adherent to treatment protocols. “Jenna got on a few medications, and one of them actually ended up seeming like it was working great from the outside … but the challenge, I think, for her and for most people in this situation is that they don’t keep taking it,” he said. “She describes it as feeling like she’s not her anymore. She feels like a zombie, or she misses the thrill of partying or whatever lifestyle that she had grown accustomed to that allowed her to escape those feelings she had. I have seen it work, where she seemed balanced, she was holding a job for the first time in her life, and getting her to keep taking [her medication] was a challenge.”

“On the other side, the relationship side, we got to a good point in our relationship, where we let go of a lot of things from the past, and we both told each other that we loved each other, but that doesn’t really change how a person acts and how much time you can really be around them without it driving you mad or you being put in harm’s way because of activity they decide to be involved in.”

Despite the progress that has been made in understanding and treating bipolar disorder, and mental illness in general, there is much more that needs to be done to help individuals who struggle with mental illness and to help their families.

On a practical level, the cost of caring for a loved one with bipolar disorder can be very high. One research study compared 43,448 families with a member with bipolar disorder with 122,769 families without bipolar disorder. The study found that the total annual health care costs of the families with a bipolar individual were three times the cost for families without a seriously mentally ill family member, because of significantly more outpatient visits, more inpatient hospital stays and more use of prescription medications.

Moreover, according to the World Health Organization and the World Economic Forum, mental illness represents the biggest economic burden of any health issue in the world, costing $2.5 trillion in 2010 and projected to cost more than $6 trillion by 2030, with two-thirds of the cost owing to disability and loss of work.

Part of the reason for the high level of disability is that people with mental illness often delay or don’t even seek treatment. For example, one study of 9,282 people examined the treatment of adult individuals aged 18 and over. The results found that while the vast majority of people with mental illness eventually did seek and receive treatment, people with mood disorders delayed six to eight years before making contact, and people with anxiety disorders delayed nine to 23 years before seeking care.

In 1999, the U.S. Surgeon General labeled stigma as perhaps one of the biggest barriers to people seeking mental health care. John MacPhee, the CEO of the Jed Foundation, which seeks to promote awareness of mental illness prevention and treatment, explained to me how stigma manifests: “Because of the stigma around mental illness, families may be reluctant to discuss their situation openly and honestly, even with friends and loved ones. Some of this may be a result of external stigma, the prejudicial attitudes that make other people react with misplaced or judgment towards mental illness. But sometimes, internalized stigma can discourage families from seeking emotional support during what can be a very challenging period. The result can be isolating for both the individual struggling with mental illness as well as [for] their family.”

Research suggests that part of what fuels stigma is a belief that people with mental illness are in control of their mood and behavior. Hawkins explained how his perspective has evolved over time. “My mom was aware … that there was a problem that maybe other people overlooked. She was reading all these books on the brain. I think I was on the opposite end of the spectrum, where I saw my sister Jenna as being enabled by Mom, thinking that she had a problem. And that even if she did have a problem, treating her as such would make the problem worse; I felt like it empowered the mental crutch. We fought about it a lot, and as time went on, I came a little bit more to my mom’s side as far as understanding it,” he said.

“It is really tricky because I think a big part of understanding the stigma is really just looking at myself in the past and a lot of the kind of intuitive comments that your mind goes through when you deal with someone like this. There are certain stigmas that are perpetuated by all kinds of different forces within the media and just the way we talk about people and things. But I think the most common stigma is built upon our natural thought process and how we react to people who are acting very strange to us.”

Hawkins talked about the importance of understanding that when someone is living a destructive life owing to mental illness, it is not because they choose to live that way. “People are not as free as we all like to believe that they are, and I think we recognize that when we are going through hard times ourselves, but then when we are going through good times, we seem to forget it almost immediately and feel that people should be and are free to change things very easily when it’s much more complicated than that.”

Hawkins has also seen another form of stigma; namely, stigma against the use of medication in general. This against the use of medication for mental illness may in part stem from the belief that mental illness is not a “real” disorder, but rather a reflection of a personal shortcoming that can be best modified through change in .

“Just the other day, on Facebook, I had made a post that sparked a discussion between multiple people about seeking help and getting it in the form of medication.” he said. “There were people who were saying that taking any form of medication, because of their conspiracy-minded perspectives, [was] basically just getting poison, and it wasn’t seeking a real solution. And while I understand part of that perspective — ideally, not taking medication and being healthy — is the goal of any human being, but to portray that it’s a conspiracy, and you’re taking poison — that’s one of the biggest things that prevented my sister Jenna from continuing on medication that was actually working and fixing her life.”

In response to his own family’s struggles, Hawkins wrote the song “Jenny” about his experience with his sister. And in with several charitable organizations, such as the Jed Foundation, Hawkins launched the #IKnowJenny Campaign to raise awareness of the struggles of people with mental illness and their families and money for charitable organizations focused on mental health.

Hawkins described the song as “almost like a time capsule.”

“It allows me to look at what I was feeling at that time and constantly re-evaluate it in light of what I think now, which is an ever-evolving perspective and understanding of this whole thing. So, it is very healthy in the long term for me.”

He was worried about the effect that the song might have on his sister, especially if she is at a low point, “So, I made sure to talk to her about it if the song was ever released. It is a very depressing song, but it is something that has spurred discussions between us that I don’t think otherwise we would have had. So, it’s been a good thing in the big picture.”

Hawkins has been impressed with the response to the #IKnowJenny campaign, and looks forward to working on reducing the stigma of mental illness. “I would also say that in school, for example, there are so many classes that we don’t really use in our lives day to day. If one of those classes was exchanged for a class on psychology or interpersonal relationships, or understanding or mental illnesses, or all of the above, I think we’d be a hundred times further.”

MacPhee explained what he thinks will help. “Above all, care and compassion. The priority for people who are struggling with mental health issues should be to seek and receive the help they need. Mental illness is treatable. No one should have to face these challenges alone. But sometimes asking for that help takes courage, which is why people who struggle with mental illness need our compassion and support,” he said. “By building a culture of compassion for those who suffer from mental illness and their families, we break down the and secrecy that too often surround these issues and stand in the way of people getting help.”

“As a community, we need to recognize that mental illness affects all our families in some way. It is part of the human condition, just like physical health challenges. As a result, we all have the opportunity to provide support and understanding so that we all know we are not alone when we are confronting the personal challenges of dealing with mental illness.”

Hawkins will continue to focus on spreading awareness of the struggles of people with mental illness and their families. “Almost every person, if they saw someone who had no legs, in a wheelchair, would go and open the door for them at a restaurant or do some nice little gesture. And they probably would feel a certain way about that person, even if they knew nothing about them,” he said. “But I don’t think we do the same thing for people who have mental issues, because we don’t recognize it, and we don’t separate it from what we consider just a person’s personality to be.”

“So, my end goal is to get people to be one step more aware of people’s limitations or behaviors and view it.

“They might be on a wheelchair in their mind.”

Michael Friedman, Ph.D., is a clinical psychologist in Manhattan and a member of EHE International’s Medical Advisory Board. Follow Dr. Friedman on Twitter @DrMikeFriedman and EHE @EHEintl.