I’m Not Sick, and I Don’t Need Help

Dealing With Anosognosia Part II

Photo by Aarón Blanco Tejedor on Unsplash

This past week I had lunch with my family member who has a serious mental illness (schizophrenia or bipolar 1, no one is totally sure of his diagnosis) and who has been living on the streets for over two years while also intermittently battling addiction. He’s in his mid-twenties and started showing symptoms of his illness sometime after he turned 18, when HIPAA laws protected his medical records from his parents. I’ve been around him enough in the last few years to recognize when he’s manic and in psychosis, when he’s using, when he’s on his meds, and when he’s not. This last visit, it was clear he wasn’t high, but wasn’t taking any prescribed psych meds. He was in manic psychosis, and also suffering from anosognosia, the little-known condition I wrote about in my last column.

The basic definition of anosognosia (an-oh-sog-nozia): A symptom experienced by those with serious mental illness (SMI) in which a person cannot recognize they have a mental illness. According to NAMI, the percentages of those with SMIs who experience anosognosia are startlingly high: 40% with bipolar disorder and, by some estimates, as high as 98% of those with a diagnosis of schizophrenia. 

Once I learned more about the implications of this cognitive dysfunction, it was revelatory. So much of the nonsensical behaviors and actions (or inactions) of individuals with an SMI (including my relative) suddenly made sense. But what was even more revelatory was how much of our society has never heard of or has any understanding of this term. As writer and mental health volunteer Trish Lockard powerfully wrote in an essay for NAMI, “I am convinced that a broad familiarity within our society about this condition would be life-changing for people with SMI and their families. Awareness, I believe, would encourage people to offer empathy for those struggling with SMI, as opposed to the contempt or disgust many seem to exhibit.”

And she’s absolutely right. Once I learned about anosognosia, I researched advice on how to better communicate with someone with an SMI and anosognosia.

Beneficial Approaches

According to an article on anosognosia published in Psychology Today, it’s recommended that people first take measures to ensure safety in the home if needed, and simplify everyday tasks to support those with anosognosia. Other beneficial approaches include:

• maintaining a patient and positive attitude

• showing empathy

• listening to the other person and expressing concern and understanding where appropriate

• providing a structured environment when possible

When visiting with my relative, I use the above approaches, and also learned to employ the LEAP technique. LEAP is a communication process developed by Dr. Xavier Amador, a psychologist at Columbia University and author of I am Not Sick I Don’t Need Help!, to assist families and mental health providers to help someone living with mental illness recognize the signs of their condition and seek treatment. It can also help when talking about other sensitive topics and with day-to-day communication.

The four components of LEAP are: listen, empathize, agree and partnership.

Listen

“The first step is to walk in the other person’s shoes to gain a clear idea of their experience of the illness and treatment.”

Set time aside for discussion

Agree on an agenda: what will be discussed – and stick to it. Don’t allow your family member to control the discussion by changing the subject.

Listen to your family member about his beliefs about self and the illness and treatments

Avoid reacting emotionally

Repeat what you hear to find out if you have heard correctly

Empathize

“If you want someone to consider seriously your point of view, be certain he feels that you have seriously considered his.”

Having empathy means being able to put yourself in the shoes of the other person and to appreciate their experience from their perspective. It requires the ability to understand, be sensitive to and care about the feelings of the other person. Empathy doesn’t mean that you have to agree with what the person is saying, rather it is letting the other person know that you appreciate how they feel... Showing empathy can help encourage a person to open up about their feelings, worries and concerns.

It is important to convey empathy for the other person’s frustrations, fears, discomforts and desires. Empathy helps to communicate respect for each other’s point of view. Little statements, such as “I understand what you are trying to say” or “I sympathize with how you are feeling” go a long way towards reassuring your family member that you are listening and want to help.

Agree

In this step you must focus on your shared observations and find the facts that you both agree on. If there is disagreement, agree to disagree. It is often helpful to find common ground. For example, your loved one may be drinking to ease the pain of mental illness and you may be seriously worried that he is abusing alcohol. Can you reach an agreement that he won’t mix medications with alcohol? In a discussion that has escalated to a heated argument, it is always a good idea to agree to leave things for the moment and wait until emotions on both sides are under control. Just agreeing to “cool down” rather than continue with the confrontation signals to your loved one that you are being supportive.

Partnership

This has to do with making a shared decision to work together on a plan of action. People living with mental illness can often feel isolated and afraid, sure that no one else understands what they are going through. By creating a partnership, you are telling your family member that you do care and you are willing to be supportive in a constructive way. It is worth remembering that sometimes support is not constructive. Enabling a loved one to continue his substance abuse because you think it is one way he can cope with mental illness is not constructive and is not a partnership. In a partnership, you help your family member deal with their fears and deal with their substance abuse in a positive way.

During our last visit, my relative did the majority of the talking, and most of what he said didn’t make sense. He talked about discovering a special understanding of the universe, finding hidden codes and signs in words, and having the ability to see angels and demons. But I just listened with expressions of interest, asked questions about his writing projects, and expressed empathy when he talked about feeling stressed or scared or threatened.

I didn’t lecture him about not taking his meds, or argue with him about any of the nonsensical things he discussed or wrote about, or pressured him to seek medical treatment. I already know that he’s not “choosing” to be and stay sick because active anosognosia prevents him from recognizing his illness and seeking medical treatment right now.

I always hug him when we part and tell him I love him.

The only expectation and hope I have is to keep a positive line of communication open with him.

Photo by Anne Nygård on Unsplash

Treatment for Anosognosia

There’s no precise “cure” for anosognosia, and unfortunately treatment strategies haven’t progressed much in the last two decades. But recent medical papers recommend focusing on symptoms rather than the illness to possibly help move individuals along in their recovery. Oftentimes, telling a person they’re sick isn’t productive.

Instead, the advice is to draw attention to their lack of engagement in their favorite hobby or activities, or point out how it feels to not shower for days at a time. Talking about hallucinations, delusions, and their specific thought process during those symptoms may go a longer way than telling them they are “schizophrenic” and “need treatment.”

So instead of trying to convince people with psychosis that, for example, their “special language de-coding” is nonsensical, the advice is to listen without judgement, and if agitated or upset, gently remind them of previous coping skills that have worked during their times of distress. Asking something like, “Do you remember when taking your medication or drawing your hallucinations helped you last time this happened?”

In my last column I mentioned how often I hear, “We can’t help him if he doesn’t want to get better,” and how frustrating it is knowing the prevalence and lack of knowledge about anosognosia.

As Trish Lockard said:

“Why aren’t practitioners explaining anosognosia to families? How much kinder, more compassionate and more patient would we be with our loved ones if we understood that their brains can't process the fact that their perception doesn’t reflect reality?

So if someone in your family — or even a close friend, neighbor, or co-worker — has a diagnosis of bipolar disorder or schizophrenia, openly discuss anosognosia with them, if they are comfortable. In fact, discuss it with anyone when the subject of mental illness comes up in conversation. Talk about it with someone whose loved one is non-compliant with their medication regimen or is refusing entry into a treatment facility. An understanding that the person is not in denial, stubborn or apathetic about their circumstances can lift a heavy weight off their shoulders. Use your personal skills and strengths to broaden awareness and generate compassion for those who, through no fault of their own, run from the outstretched hand of help.” ~

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My next column will be Anosognosia Part III: dealing with severe cases, HIPPA laws, and possible involuntary treatments.

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