Making Sense Of One Of The Most Misunderstood Symptoms
"She fills out forms for her disability and she puts down that she has a sleep disorder," says Halifax, Nova Scotia, mother Jane Collins of her daughter, Martha. "She won't talk about her schizophrenia; she gets very mad and very defensive if I ask her about it. She tells me it's none of my business and I don't know what I'm talking about."
Martha has been struggling with symptoms of schizophrenia for more than 10 years and since she won't admit she has an illness, she is not getting the help and support she needs.
"I feel like right now we're in a dead space," Collins says. "She's not getting any better and she's not going anywhere because she doesn't want to follow through with treatment."
Collins feels helpless when it comes to Martha. "I want her to be the best person she can be and I want her to have success. It's so frustrating because all I can do is watch. I don't want to nag her about things because I'm worried she will just shut me down and shut me out all together."
One of the most frustrating and misunderstood symptoms of schizophrenia is anosognosia. It affects approximately 50 percent of individuals with schizophrenia but what does it really mean?
Anosognosia is a general lack of awareness or insight into one's illness. Simply put, the person believes that his delusions and hallucinations are real and he does not recognize that he is sick.
Often mistaken for denial, anosognosia is a genuine inability to see that a problem exists. "In the case of denial, you actually know deep down that you have a problem but you can't handle it, so unconsciously you forget or suppress that awareness," says Xavier Amador, PhD, psychologist and author of the book I Am Not Sick, I Don't Need Help! [Vida Press, 2007]. "Anosognosia is different. It's a symptom of a number of different brain disorders that affect the frontal lobe of the brain. It's an actual unawareness. You never knew you had a problem in the first place."
Although the term has only been in the Diagnostic and Statistical Manual of Mental Disorders (DSM) since 2000, anosognosia has been known and studied for many years. The term was first used by the French neurologist, Joseph Francois Babinski, in 1914 and has been widely known in the field of psychiatry for more than 30 years.
"The science isn't new, but it has taken a long time to reach the people who need it—consumers and their families and caregivers," says Amador.
"I have had to do a lot of my own research and educate myself about this illness," says Angela Ghiz, whose 72-year-old mother has schizophrenia. "I didn't know what anosognosia was at first but the more I learn about it, the more I know my mother has it. She is very delusional and paranoid. She is hearing voices and she says I'm the one that's sick, not her."
Impaired awareness is the number one reason why individuals with schizophrenia do not take their medications, according to the Treatment Advocacy Center, a U.S. non-profit organization dedicated to eliminating barriers to the timely and effective treatment of severe mental illness. Untreated schizophrenia increases a person's risk for being hospitalized and committing suicide. And it can lead to increased risk of homelessness and even incarceration.
"My mom is very sick but she doesn't want any help," says Ghiz. "It's been really frustrating to find help because most of the places say that my mom has to be willing to accept help. How is that going to happen when she doesn't believe she has any problems? Now I have to worry that she is alone and could harm herself. It's very painful."
Stop talking, start listening
When a person's symptoms are so obvious, it can be really difficult for family, friends, caregivers, and even health care professionals to accept that the sick person cannot see his problems. This often leads to serious conflicts.
"It creates conflicts because we try to convince the person that they are sick," says Amador. "We assume that logic and facts will be our ally in explaining to the person the reasons behind what they are experiencing. We assume that deep down inside they know they are really sick. A person with anosognosia may never develop insight into their illness, and by thinking the person is refusing to admit they are sick, you are immediately revealing that you are in an adversary role."
Friends and family often start to blame the sick individual, accuse him of being insensitive, irresponsible, or stubborn. They drive the person away from treatment, says Amador. "I went through this with my brother Henry for seven years. I would say to him 'Cut it out. You know that you are really sick, just take your medication.' I gave him all kinds of negative labels. I accused him of being stubborn and of hurting our mother."
Lack of insight can also have a negative effect on relationships. "When Martha first got sick, I was in my second marriage at the time," says Collins. "Martha would be up all night, in the kitchen next to our bedroom. I was giving her a lot of my income, paying for all of her bills, and [my husband] didn't agree with that. There was a lot of friction between us over Martha, and eventually we split up."
Collins says the illness has devastated Martha's two sisters as well. "Martha and her younger sister used to be really close, but when she got sick, there was a lot of fighting; Martha stopped sharing things with her. She was devastated and started drinking. She was only about 15 at the time."
All hope is not lost
The same is true for Ghiz and her family. "My mom's illness has put a huge strain on our family. My sister and I are constantly bickering about what to do and fighting about my mom. We never get a break; we are constantly worrying and rushing over to her place to make sure everything is okay."
"It's so hard to feel this way," Ghiz continues. "I have no control over it and I'm at a point now where I'm letting go. I have accepted the fact that she'll probably end up dying without getting support and without us getting a break."
But it doesn't have to be this way. The symptom of anosognosia doesn't mean that all hope is lost, says Amador. "It doesn't mean that the person is going to do worse. Instead it's a red flag for us to stop telling the person they're sick and start listening to them instead. It just means we have to approach them in a different way."
Amador suggests listening to your loved one, to try to discover their goals and find out what is important to them. "It's essential to stop being their adversary and become their friend.
Build up their trust by truly listening to what they have to say and respecting them. Often you find they do open up about some of the problems they are having, like trouble sleeping or anxiety."
Emily Collette, a family mental health counselor at the Family Outreach and Response program in Toronto, Ontario, agrees that listening is the key to recovery. "We really try to help families connect with the individual on their level. Listen to them and find out what are the pieces of the person's life that they are interested in focusing on right now?
"It's important to remember that people can start working towards their recovery without acknowledging that they are having an issue," says Collette. "Just by focusing on the person's goals and helping them work towards achieving them is enough."
Empathize with the person and find common ground. "We might not be able to connect with the person about what the issue related to psychosis is, such as whether aliens are coming to get us, but we can connect when it comes to how that person is feeling," says Collette.
Another important aspect of helping a person with lack of insight is to work towards building a strong relationship of trust and respect.
"When I stopped blaming Henry for his illness and I had compassion for him, we stopped arguing. I won the battle not on the strength of my argument that he was sick, but on the strength of our relationship," says Amador. "He felt respected. He felt that I didn't judge him and I genuinely accepted his point of view. When you have a strong relationship, they trust you and they actually listen when you give advice."
Focusing on treating only the problems that they recognize is another way to engage a person with anosognosia. "If a person is saying they feel stressed or anxious about what's happening, that is an issue we can help them with. It is a place where we can help them start their journey of recovery," says Amador.
Just because a person has anosognosia doesn't mean he won't engage in treatment. Amador says people may accept treatment because someone they trust—like a mother, sibling, friend, or doctor—thinks he should.
"They may not be in treatment because they believe they have a mental illness, but often a person they trust encourages them to try it and that may be enough. I would say to my brother, 'You know, when you're on the medication people don't get so scared and you're not talking out loud. I know I'll sleep better tonight if you go to your appointment but if you don't want to go, I accept that.' He would often listen to me and take his medication."
If a person is not identifying any issues, Collette agrees that there are still ways to help. "As family members, we can continue to share what our concerns are and work to create a safe space where the person can feel like they can talk about what is happening to them. If they don't want to open up with family, there are other places they may open up, such as online support, peer support, or even to a case worker."
Although Collette accepts anosognosia as a symptom of schizophrenia, she cautions against adding another label to a person. "Adding another label can contribute to the stigmatization process, which people with mental illnesses are already affected significantly by. It also doesn't necessarily speak to what the person is going through, so we instead try to get families to look at using the language that their loved one is using to describe what is happening to them.
"We have also found in our experience working with families, that applying a label like anosognosia can sometimes stop a family from really trying to build an understanding of what's happening to their loved one."
The term and its meaning can bring a lot of pessimism and feelings of frustration and helplessness, says Collette. If they don't truly understand the term, they may fall into thinking that there is nothing they can do for their loved one.
"We encourage our families to stay strong and make sure they are taking care of themselves as well. If you are a caregiver, it's important to reduce stress and be in a healthy space yourself. You have to care for yourself before you will be able to support someone who is struggling."
Even though Collins' daughter Martha is still struggling with her symptoms, she hasn't given up hope. "I am still going to do everything possible to get help and support for my daughter. I am working on building her trust and I know that it's not going to be an easy thing to do. Trust is so difficult to build and so easy to break. But I love my daughter and I want to be there for her and see her have success in my lifetime."
How do you know it's anosognosia and not denial?
- The lack of insight is severe and persistent. It lasts for months or years.
- The person's beliefs are fixed and do not change even when they have been presented with overwhelming evidence that they are wrong.
- The person has illogical explanations that they use to explain away the evidence of the illness.