By Katherine Ponte, JD, MBA, CPRP
Accepting a diagnosis is one of the most difficult experiences for people living with mental illness (as well as their caregivers). It certainly was for me and my spouse. I refused to come to terms with my diagnosis for six years. It took an involuntary hospitalization to start treatment, another 10 years to fully embrace treatment and two additional years to reach recovery.
Unfortunately, my experience is common. People living with mental illness often ignore, minimize, dismiss or refuse to accept their diagnoses, largely due to stigma surrounding mental health conditions. This can lead to delaying treatment, as it did for me. Unsurprisingly, then, the average time between symptom onset and treatment is 11 years. This delay can make a condition worse and harder to treat.
There are several things that caregivers and providers can do to reduce stigma and help people with mental illness accept their diagnoses and the treatment they need.
Use Empathy and Compassion
A health care provider is usually the first person to deliver a diagnosis. Sometimes they may do so quickly, or even insensitively, considering how shocking and discomforting this news can be. Many studies show that health care providers may stigmatize their patients, including expressing negative attitudes while discussing the prognosis of a person’s condition.
A patient is more likely to accept a diagnosis if you deliver it empathetically. For example, you can reach a more positive outcome by telling them that, while it might seem scary, you will work with them to reduce symptoms and improve their quality of life.
Give Hopeful Messages
Stigma may contribute to the view that serious mental illness (SMI) is “a death sentence.” Naturally, this can be crushing to a patient. So, while it’s important to give a realistic prognosis, you should also make sure to offer hope to a patient. You can do this by telling patients that recovery is possible. Providing relatable examples of people living with SMI can also provide significant hope.
Combat Societal Stigma
One of the best ways you can help your patients accept a diagnosis is by working to counter the stigma that patients may have internalized. You can do this by dispelling myths, providing the patient with facts and facilitating their mental health education.
Normalize Mental Illness
You should let your patients know that 21% of people live with mental illness. For people with SMI, it can be more effective to state the numbers rather than percentages. For example, more than 13 million people (rather than 5.2%) experience serious mental illness each year.
Use Empathy and Compassion
Caregivers should focus on the person they’re caring for (not the illness) and avoid using stigmatizing statements. You can help by letting your loved one know that they are cherished, that the relationship has not changed and that you will always be there for support.
It is also important to understand the emotional distress that a diagnosis may cause and to be patient with a loved one’s journey to accept the new reality — coming to terms with a diagnosis can take time.
Accept the Diagnosis
Caregivers may also have a difficult time accepting a diagnosis. If this is the case, you should avoid making hurtful statements to your loved ones like “I had so many dreams for you...” This can be extremely harmful to a loved one and make them feel like a disappointment to their family.
It can be helpful to learn more about a loved one’s condition and to speak with someone who has also experienced a mental illness. Of course, a health care provider can also be a valuable resource.
Do Not Force Treatment
Caregivers may, and should, encourage their loved one to seek treatment — but the decision is ultimately up to the person with mental illness. Threatening to force treatment may cause a loved one to become angry and can significantly strain the relationship. If the person needing treatment withdraws and isolates, it may be more difficult to help them.
When a person makes their own decision to seek treatment and feels they are in control, they are more likely to be adherent to treatment recommendations.
Recognize Lack of Insight
Lack of insight is a condition where a person refuses to accept that they are sick. This is not a conscious decision, but rather a symptom of mental illness that causes a person to be unable to perceive their condition accurately. If you are concerned that your loved one may be experiencing this, you should consult a professional. There is a communication approach that many caregivers find helpful, called LEAP, which stands for listen, empathize, agree and partner.
It’s essential for caregivers to offer support to their loved one (without smothering them). The first step is learning the best way to talk to a loved one and asking them what does and doesn’t help. Understanding self-stigma can also provide an extremely helpful perspective in what negative perceptions prevent them from accepting their diagnoses.
Prepare for a Crisis
No family wants to think of a crisis, such as a hospitalization or an arrest. But unfortunately, this does happen to many people with mental illness. It’s essential to know your crisis response options and come up with a crisis plan with your loved one while they are well enough to make decisions.
It can be extremely heartbreaking for a caregiver to watch their loved one refuse their diagnosis and treatment. I deeply regret my refusal to accept my diagnosis and treatment sooner. I often share this message with people I meet who are struggling.
I think things would have been much different for me if I had heard the life-saving, hopeful message that recovery is possible, especially from my previous health care providers. I wish I had not stayed with these practitioners for so long, knowing that they did not have hope for me. In many cases, providers and caregivers sharing the message of hope is the most effective way to help someone one accept their diagnosis and treatment. Acceptance starts with hope.
Katherine is happily living in recovery from severe bipolar I disorder. She’s the Founder of ForLikeMinds’ mental illness peer support community, BipolarThriving: Recovery Coaching, and Psych Ward Greeting Cards. Katherine is also a Faculty Member of the Program for Recovery and Community Health at Yale University and has authored ForLikeMinds: Mental Illness Recovery Insights. She is on the NAMI-NYC Board.
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