Loving Someone With Serious Mental Illness

This year I am celebrating six years in recovery from severe bipolar I disorder with psychosis after an 18-year battle. My spouse and I needed each other to reach recovery together. We made it through a lot, but it wasn’t always easy. At many times he didn’t know what to think, say, or do. Neither did I. We did everything wrong. Living together was unbearable. We both lost hope. We each had recovery as a goal, but hardly ever felt like partners in the journey… until we did.

Now we’re sharing our lived experience to try to make others' journey less uncertain, more manageable, less challenging, and less prolonged. I’ve shared my lived experience in many writings. Here are a few insights from our family to yours on your recovery journey:

• Stop feeling guilty. You are not to blame for your loved one’s illness. Stigma may say otherwise. If you believe it, the idea that you did something intentionally or unintentionally, consciously or subconsciously, to hurt your loved one can be devastating and even paralyzing. Feeling guilt is common, but it won’t help. You will make mistakes. You’ll learn from them.
• Let your loved one decide (unless they have impaired judgment). Don’t insist that your loved one follow your advice. Telling your loved one how to “fix” their situation can lead to resistance, which is sometimes referred to as the “righting reflex” in Motivational Interviewing. Allowing your loved one to freely make decisions, with expert guidance and your support, will make them more likely to take responsibility for their illness, which is critical to reaching recovery. Never mistake apathy or silence for acquiescence. Make a collaborative plan to work together, one in which your loved one is in control.
• Protect the relationship. Expect the worst-case scenarios. Try to address them, but know and respect what you can and cannot control. Your loved one may refuse to get help, accept a diagnosis, or adhere to treatment. They may experience apathy, negativity, resistance, withdrawal, and isolation. Knowing what to expect can help, because sometimes the surprise is worse than not knowing what to do. Prepare for them. You will get upset from time to time. Vent, but not with your loved one. Respond calmly. Never act spontaneously. Be forgiving. Don’t let the downs break your relationship. Trust and honesty will make your relationship stronger. You need to prioritize a good relationship so you can address the challenges together.
• Have meaningful conversations. Anchor conversations in empathy and compassion. Communication blockers such as attention deficits, lack of motivation, agitation, and heightened sensitivity may be symptoms. Believing stigma can make things even worse. Speak with caution. Use active listening skills (listening to what a person says and then reflecting what was said in a way that demonstrates understanding) and clear and simple language, and keep discussions to one or two topics and keep it brief. Always provide loving companionship even if you need to gently nudge them. Just be there. Always ask your loved one, “Can I help?” and “How can I help?”
• Expect to feel many emotions. The impact of emotions can be greater than the impact of the illness itself. Some common emotions you may experience include anger, confusion, denial, fear, guilt, helplessness, loss, resentment, and shame and embarrassment. These are all common. Your loved one may also experience these same emotions. They may feel them more strongly than you due to the internalization of stigma or self-stigma. Listen and validate your loved one’s feelings even if they seem unreasonable or irrational. Always focus on their emotions, not the actions, except in cases of harmful or suicidal behavior. Emotional triggers can lead to stress, which can lead to episodes. You will learn their triggers over time as they often repeat. Learn and practice distress tolerance skills in Dialectical Behavior Therapy and meditation and mindfulness.

Here are a few common emotions your loved one may experience, possible triggers, and how to easily and quickly address them. Not everything about mental illness needs to be hard when you learn from lived experience.

Your loved one feels:

• Attacked when you accuse them of not trying hard enough to get well. Always tell them mental illness is hard and you’re proud that they’re trying so hard.
• Blame for getting mental illness. Let them know that it’s not their fault and that one in five people have a mental illness, according to The National Alliance on Mental Illness (NAMI).
• Fear about never being able to get better and their future. Show them examples of recovery.
• People can’t seem to understand how they’re feeling. Say, "You’re right, I can’t, but I know it must be incredibly hard”
• Overwhelmed by routine life tasks. Acknowledge and reward small achievements, including things like getting up of bed earlier, showering, etc.
• Resentment about their situation. Let them know you’d be angry too.
• Resentment at you. Redirect their focus on the illness, not a person.
• Trapped from being dependent on you. Offer them rewards for tasks and help them return to school and/or seek volunteer work and/or employment.

Ruminating on these emotions can worsen their illness. Identify emotions and talk about them. Empathize with how they’re feeling: "I’m sorry you’re feeling… Things can get better.” Gently apply the lessons of cognitive distortions from Cognitive Behavioral Therapy. Show them that they are not alone by seeking out peer support. Research and suggest resources like Certified Peer Specialists, which can often be found in Community Behavioral Health Centers, NAMI's Peer-to-Peer Program offered by local affiliates, the Depression and Bipolar Support Alliance’s support groups, Clubhouses, and warmlines.

Know the basics about key topics affecting your loved one, including stigma, diagnosis, crisis management, treatment providers and treatment management, emotions, relationships, self-care, and everyday living such as employment and education. Most importantly, know the early warning signs of an episode and how to quickly address them, which can enhance outcomes. Always refer to reputable sources of information, understanding that the best source of information is your treatment provider.

Respect what your loved one needs and wants in life. Don’t focus merely on concerns like treatment adherence: the “medical model." Focus on quality of life issues such as employment, education, financial freedom, independent housing, relationships, and the pursuit of a full and meaningful life as your loved one defines it. This is the recovery model, which can often lead to better outcomes and relationships. Learning what your loved one wants will better enable you to motivate them to do the things they need to do. Let your loved one set the pace for recovery and take calculated risks. Promote resiliency, one of our most valuable characteristics.

Promote self-care. It’s critical to recovery, especially good sleep hygiene, good diet, regular exercise, and stress management. Apply a holistic perspective like the “Eight Dimensions of Wellness” and strengths-based approach. Help them identify the best self-care options and set “S.M.A.R.T. goals" — those that are specific, measurable, attainable, relevant, and time-bound. Help set routines and structure. Practice self-care together; you need it too.

Importantly, know that caregiver burnout and fatigue is common and can lead to mental distress. Treatment can help you too. Boundaries can be important. You’ll be the best caregiver when you care for yourself. Your loved one needs you well. If you’re not well, that can make them feel like a burden, which can worsen their symptoms.

Above all else you need each other’s hope to reach recovery. And along each step of the journey remember that you will not always agree on the path to take, but you can agree on the destination: recovery.

To find a therapist, visit the Psychology Today Therapy Directory.