People who are living with mental illness or substance misuse often have difficulty following through with the recommendations suggested by their health care professionals. A frequent example is not taking medications as prescribed, which can mean missing doses or discontinuing the medicine altogether.
Other typical scenarios include not keeping follow-up appointments, not completing homework assigned in therapy sessions, and not being mindful of self-care practices such as exercising, eating a healthy diet or getting enough sleep or rest.
There are several negative consequences when people don’t follow through with their recommended treatment plan. They are more likely to have increased symptoms, experience more frequent relapses, need additional hospitalizations, and have an overall poorer quality of life.
When these issues arise, health care providers are sometimes quick to label the person as being “noncompliant” with their treatment plan. The dictionary defines “noncompliance” as “failure or refusal to comply.” This can imply a lack of ability or a deliberate or willful choice on the part of the person to not follow through with the therapeutic tasks prescribed by the professional.
If this pattern continues over time, care providers may use more pejorative terms such as “resistant,” “difficult,” or “unmotivated” to describe the person and their less than optimal behaviors.
Take the “Noncompliance Quiz”
It’s important to step back for a moment and think about how difficult it is to follow through with health care recommendations even if you’re not dealing with a mental illness.
Here’s my unofficial “Noncompliance Quiz.” Answer the questions honestly. All of the questions have to do with behaviors that are generally recommended to promote overall health and wellness.
1) Do you get 7 to 8 hours of sleep most nights? YES NO
2) Do you eat 5 servings of fruits or vegetables most days? YES NO
3) Do you get 30 minutes of vigorous physical activity 3-4 times per week? YES NO
4) Do you always take your full 10-day supply of antibiotic medication? YES NO
5) Do you always wear a seat belt while riding in a car? YES NO
6) Do you always wear a helmet while riding a bicycle or motorcycle? YES NO
7) Do you and your romantic partner always practice “safe sex”? YES NO
8) Do you always get an annual physical exam and flu shot? YES NO
Chances are you said NO to at least a few of these questions. If so, then you are being “noncompliant” with standard health care recommendations. How do you feel hearing that term? Talked down to? Less than adequate? Like a failure?
Now, imagine for a moment you also have a mental illness or substance use disorder which brings its own unique set of challenges to your daily life. Does being labeled “noncompliant” increase or decrease your motivation? Does it make you feel empowered or disillusioned? Hopeful or hopeless?
Lack of insight
It’s widely known that a common symptom of serious mental illness, and schizophrenia in particular, is lack of insight. This means the person may have little or no awareness of their illness, and may flatly deny they are sick when given feedback about their illness. This can occur in half or more of the people who have schizophrenia.
We now know that this symptom, also called anosognosia (uh-no-sog-NOH-zee-uh), is similar to that found in individuals with brain damage or other neurological problems. It is not denial, nor is it a voluntary or willful attempt to be difficult or challenging. Furthermore, anosognosia has been cited as the most frequent predictor of treatment “noncompliance.”
This does not mean that everyone with a mental illness has this severe lack of insight. In fact, many people are fully aware of their illness and are very interested in learning how to manage it more effectively to have improved health and happiness.
Yet, despite having awareness of their illness, many may still have considerable difficulty completing the treatment recommendations suggested by their doctors and therapists. This can be due to fatigue, depression, anxiety, fear, guilt, shame, avoidance, lack of social support, inadequate access to health care, financial limitations and a host of other reasons.
Engagement, not compliance
This leads to the conclusion that’s it is indeed a very common occurrence for people with mental illness to not follow through with treatment recommendations and other healthy lifestyle choices and behaviors. As we’ve discussed, this can be due to a chronic lack of insight which is a symptom of severe mental illness or due to many other psychological and environmental factors.
Understanding this, we have to be careful not to discourage, blame or demean people with mental illness for not being able to accept they have an illness or for not carrying out the behaviors that would help them get better.
Just as people with mental illness are stigmatized by our misuse of diagnostic terms (“he’s a schizophrenic;” “she’s borderline”), we create additional stigma, embarrassment and shame when we say they are “noncompliant,” “resistant” or “lacking motivation.”
So, what do we say instead? Go for the positives. Use the terms “engagement,” “participation,” or “involvement” and put them in the form of a positive goal for the future. For example, say, “We want to help you get more engaged/involved/empowered/active (take your pick here) in your recovery.”
If we absolutely have to have a synonym for noncompliance in official health care records, let’s use “nonadherence.” But why not just say, “Mr. Jones hasn’t completed his homework” or “Ms. Smith hasn’t fully met her treatment goals yet” or “Tom hasn’t fully maintained his medication schedule.”
It’s time to retire the term “noncompliance” from our vocabulary. Whether you live with mental illness or want to help someone living with mental illness, we can all be more positive and encouraging in our communications and motivate people to keep moving forward toward their recovery goals.
Here’s a question: What other words can be used to motivate someone and encourage them to keep working on their recovery goals? Please leave a comment. Also please consider subscribing to my blog and feel free to follow me on X (formerly Twitter), “like” my Facebook page, or connect on LinkedIn. Thanks!