When a loved one is diagnosed with schizophrenia, it can be an overwhelming and challenging experience for both the individual and their family. Your support and understanding play a crucial role in your loved one’s journey towards recovery.
We will explore practical strategies and insights to help you navigate this journey alongside your loved one. From separating your loved one from their diagnosis to modeling self-care, we will cover essential topics that can make a significant difference in your relationship and their overall well-being.
Separate your loved one from their diagnosis
To begin separating your loved one from the challenges they're facing, you have to learn more about schizophrenia. The more you understand, the more you can empathize. It's particularly helpful to start by learning about causes, symptoms, and treatment options.
Learn from education programs, books, and articles
There is a learning curve around most diagnoses, and schizophrenia is no different. Some families really resist this step. You don’t have to learn everything at once. There are education programs designed to help family members cut through the noise. At Akin, we’ve designed a program that combines the most relevant research, peer support, skills practice, and expert guidance.
For some, the number of questions alone may feel overwhelming. It’s natural to feel afraid and concerned about your loved one’s diagnosis. The more families know, the more empowered they feel to have an impact on their loved ones. Plus, knowing what to expect can reduce some feelings of anxiety and stress. You’ll also be able to spot symptoms early and be a better advocate.
Be aware of stigma
A schizophrenia diagnosis still carries a lot of stigma for an individual and their family. It can feel like you’ve stepped into a minefield. As you learn more, it’s important to remember that your loved one’s diagnosis is just a tool. It’s there to give you a shared language to use with your loved one and their providers. It’s less useful when it becomes a source of conflict.
Reading articles like this one is a great way to start your learning journey. There are also many highly-rated books written for families. Two popular books include:The Complete Family Guide to Schizophrenia by Kim T. Mueser and Susan Gingerich, and You Are Not Alone: The NAMI Guide to Navigating Mental Health by Ken Duckworth.
Remember, don’t fixate on learning only about your loved one’s diagnosis. The goal is to understand your loved one’s experience. Explore information about recovery, symptoms, treatment options, communication, and more. It’s also vital to learn from other families who’ve been there and people who have personal lived experience of schizophrenia.
Partner with your loved one
Your loved one likely doesn't see the situation the same way you do - and that’s putting it mildly. The support you offer needs to align with what they need as an individual. You can have more success when you partner with your loved one instead of trying to convince them that they need help.
Focus on your loved ones’ goals
Treatment and recovery are often very unique to each person. Your loved one is the expert in their own lives. It’s vital to learn what you can from other sources, yet it’s just as important to recognize your loved one’s perspective.
A good way to partner with your loved one is to focus on what's important to them rather than offering to help with schizophrenia. It can be powerful to ask your loved one what they want or need from you. Their goals may not be the goals you have for them. That’s okay. Try to understand their perspective and their reality even if you don't agree or like it. Asking them about their wants and needs isn’t the same as committing to giving them what they want. Your loved ones' desires might not always be realistic or healthy. The point is to understand enough about what they want for themselves to be able to work together.
Adjust how you’re communicating
You may not agree on the facts of a situation or what’s real and what’s not real. But you can still show that you care about how they feel, and you can empathize with that feeling. Connecting on emotions is a great way to build a stronger bond and to have conversations that are authentic and honest. You don’t have to pretend to believe something you don't to have a conversation with your loved one.
Focus on what you can agree on. Maybe your loved one is really bothered by some of their symptoms, or their symptoms are getting in the way of things they want to do. Or perhaps they want to focus on something unrelated to symptoms. It's often more fruitful to meet them where they are. The more you can talk about smaller concerns, the more trust you'll build to tackle bigger issues together.
Be mindful of the words you use
One thing you can start doing differently today is using “I” instead of “You”. Expressing to your loved one how a situation is making you feel shifts the focus from blaming them and makes it easier to connect on the same thing. It’s also possible to talk about situations when you don’t agree. It’s okay to say that your experience isn’t the same as your loved one. You can hold on to your own reality without trying to convince them that they're wrong.
You also can ease some tension by using different words. We recommend using the specific language that you hear your loved one use. If they aren't using the term "schizophrenia" you don't need to use it. They might talk about hearing voices, losing sleep, or having hallucinations, so you can use those phrases.
Make time for practice and modeling
Learning and improving your communication skills can make a huge difference in your relationship. At Akin, we have interactive sessions for families to practice proven communications skills in a safe space. You may not always get the response you expect, or even the response you deserve. But modeling these skills is a gentle nudge toward your loved one to use them too and gives you some structure to have more difficult conversations.
It can be difficult to partner when it feels like everything is a conflict, or if you disagree with most of what your loved one wants. If you don’t feel like partnering would work right now, that could be an indicator that you need to focus on building more trust in your relationship. It’s difficult to have influence in either direction when you or your loved one isn’t feeling heard and understood.
Expand your support system
Many families want to tackle this on their own because it is often deeply personal. But it’s unrealistic to do everything on your own. Mental illness impacts the whole family. You deserve support.
Join a support group
It can feel safer for families to open up to other people who’ve been there. Support groups offer many benefits for families. They are a great way to gain insight into what others have tried, what helps, and what doesn’t help. There are many other families out there with the same questions you have. Support groups can also reduce feelings of isolation families feel. They offer a place to share experiences, challenges, and triumphs. There is so much power in talking to other people about their experiences - it brings clarity and connection.
Get support from family and friends
You can also get less formal support. If it’s hard for you to open up to friends or extended family that’s totally understandable. Not everyone will have useful advice or be as supportive as you hope. Because of the myths and stigma surrounding schizophrenia, close friends and family might find it difficult to empathize.
You don’t have to talk about your day-to-day challenges if you don’t feel ready, or if people aren’t receptive. You can still get support from this part of your network by continuing to engage in social activities and asking for different types of support. For example, you might not want to share specifics with a friend who thinks you should kick your loved one out, but you can still rely on that person if you need to get out of the house for a few hours.
Support doesn’t have to be only talking. You can allow other family members or friends to take on responsibilities as a way to support you. The goal of expanding and leveraging your support system is to allow others to help you because supporting a loved one with schizophrenia can take a lot out of you.
Get professional support
Depending on how much you believe your own mental and emotional well-being is being impacted, you can consider seeking out your own mental health provider.
You might need different levels of support at different times in your loved one’s journey. Having extra support in the beginning or during relapses can be especially beneficial. When in doubt, reach out for support. There are other people out there who get it. You don’t have to do this alone.
Talk about treatment from a holistic perspective
Your loved one’s relationship with accepting treatment is likely complicated. Families often can feel like they’re doing something wrong if their loved one refuses to get treatment or discontinues treatment. In reality, most people with severe mental illness refuse or stop adhering to treatment at some point. Recovery is typically up and down, and it requires ongoing maintenance - not just one stay at the hospital.
Try to understand how your loved one feels about treatment
While there are many reasons people refuse treatment, it doesn’t mean they always will. In fact, many people who accept treatment have refused, even vigorously, for long periods in the past.
Sometimes people refuse treatment because they genuinely don’t believe there is anything wrong. If your loved one refuses treatment, there is likely a reason why. Understanding their specific reasons can help you work together to figure out what options might work for them.
Think about treatment beyond medication
Many family members fixate on medication as the most significant part of treatment. Medication does play an important role for many people, but recovery is more than taking medication for most people living well with schizophrenia.
Therapy can be a good option for managing symptoms and learning new skills to cope. However, not all mental health providers specialize in supporting people living with schizophrenia. There are specialized interventions including programs for first episodes of psychosis and Cognitive Behavior Therapy for schizophrenia you can look into. The best services include not only therapy or medication but also holistic “wraparound” support in other important areas of life. In general, finding a provider your loved one feels comfortable with is important. When it comes to treatment, it's not always just finding the right program or provider but also the right timing for your loved one.
An often overlooked resource is peer support. Talking to others who have similar symptoms and experiences can help your loved one better make sense of their own experience. It can give them insight into what recovery looks like for different people and what’s possible for them. It also can help reduce feelings of isolation and loneliness. Peer support can give your loved one more hope that they can create a life of stability and purpose.
Be an advocate in the health care system
There is a lot of advice about encouraging your loved one to adhere to their medication and to keep up with their provider visits. While this is helpful advice, it doesn’t tell the whole story.
Lead with empathy
Many people with severe mental illness and their families have negative experiences with the health care system. The path to good care usually falls somewhere between challenging and traumatizing. It also takes trial and error for many people to find medication that works with less side effects. It can be helpful to read about other people’s real life experiences. Listening to your loved one’s concerns, especially about their experiences within the healthcare system is essential for maintaining trust. Remember that it’s likely stressful for your loved ones to keep up with everything even when they actively want treatment.
Provide administrative help
Beyond listening and letting them know you’re on their side, you can help by taking on some of the administrative responsibilities. People with schizophrenia often have more difficulty planning, organizing, and staying motivated. Families often help with healthy lifestyle habits. Think about how complicated it really is to get to the doctor, know what to ask, what to tell the doctor, and act on the doctor’s recommendations. Families can help with tools like routines, calendars, to-do lists, and other tools that help us stay on track.
It can also be helpful to look into some of the legal considerations to make sure your loved one is as protected as possible. One we recommend for families is learning about Psychiatric Advance Directives.
Helping your loved one navigate the healthcare system and taking their concerns seriously is critical to maintaining trust and getting them the care they need. This is also an area where you can ask for more support from your network or find programs or clinics that help families navigate the healthcare system.
Create a new normal for your relationship
It might feel normal at this point to focus on your loved one’s diagnosis. Or you might find yourself wanting things to be like they were. It’s natural to want things to go “back to normal”. As with any other big life change or diagnosis, "back to normal" isn't a realistic expectation. However, a positive new normal is definitely possible.
Prioritize your relationship
Spending all your time thinking or talking about their diagnosis can quickly become exhausting for both of you. Focusing on their diagnosis also makes it easy to forget about the rest of who they are as a person. In the same way your loved one’s diagnosis isn't their identity, your relationship with them doesn’t have to revolve around their diagnosis.
To find out if you’re falling into this trap, ask yourself if all your conversations revolve around symptoms or treatment. If so, it’s time to change the subject. This doesn’t mean you never talk about these things, but it’s hard to maintain a relationship when the entire focus is on their challenges.
Do things you enjoy together
Start by doing something together that you both enjoy. Planning activities helps reinforce that you see them as more than their diagnosis. Quality time together is meaningful and can be a break from disagreements and tough subjects. You don't have to fix schizophrenia in order to have a relationship. However, planning enjoyable activities is a key ingredient in many of the best therapies for people with schizophrenia. Families often play a critical role in helping their loved one to plan and experience enjoyment and meaningful activities.
If you are having feelings of grief or loss, it’s important to process those feelings. Support groups or therapy are great for helping you work through the pain you might be experiencing.
If you are having feelings of grief or loss, it’s important to process those feelings. Support groups or therapy are great for helping you work through the pain you might be experiencing.
Foster genuine hope about recovery
Recovery is fundamentally about living a good life whether or not symptoms persist. However, recovery is an ongoing process, not an ending. Your loved one can live a full, meaningful life. Recovery is not only possible, it’s expected to happen when a person has support, resources, and treatment. But episodes of instability and severity of symptoms are normal and should be expected. It’s important to foster not only hope for your loved one, but also for yourself. Seek out stories of hope.
Seek out personal stories
Listening to personal stories will open your mind to new possibilities. Statistically someone you know or their loved one is likely living well with a severe mental illness.
Some people living well with schizophrenia have families, careers they enjoy, and hobbies that are meaningful. Not everyone living well is symptoms free. Some people have different relationships with their hallucinations. So many futures are possible, but it’s hard to imagine them without learning from people who live well with schizophrenia.
You can watch videos online to get started. Seeking out different perspectives is important. Lauren, a Youtuber, shares her story of schizophrenia and talks about ways families and partners can help. Kody, another Youtuber living with schizophrenia, shares his experience and tips for getting back into the workforce and.
Celebrate their strengths
Since recovery is ongoing, you don’t have to wait to start noticing progress. Many people might only see their diagnosis or symptoms, but there is always more there. It’s key to notice your loved one’s wins, no matter how small.
It's good to be curious about your loved one's experiences. They will likely grow and change on their journey of recovery. Your loved one has something valuable to offer the world - help shine a light on their strength, not their diagnosis.
Model taking care of yourself
You matter. Schizophrenia happens to the whole family, not just the individual. Taking care of yourself and your own stress is a part of helping your loved one.
Pace yourself
You might want to learn or do everything at once, but that can be a recipe for burnout, especially if you aren’t taking care of yourself. Supporting a loved one with schizophrenia isn’t a sprint. Recovery is ongoing, and your loved one may need your help or support throughout their journey. Taking care of yourself now means you’ll be there for them in the future.
Stick to your rituals and routines
During chaotic times, it’s meaningful to have your own anchors. Keep vital routines including eating regular meals and having a consistent sleep schedule. Maintaining your own habits is also a good way to model maintaining routines for your loved one.
Carve out small chunks of time
It might not be realistic to have a lot of time for yourself. You might have other responsibilities and people to care for. We recommend doing the “small things” to keep your self-care consistent. Some examples include doing a morning stretch, listening to music you love, practicing a hobby, walking around the block, or even taking some moments for a few deep breaths. Even if you don’t have much time, you can use these moments to center yourself and your own experience.
Be willing to accept help
It’s not always easy to accept support, even when you want or need it. Your loved one might also struggle with accepting support. It’s worth noting that you’re not expected to do everything on your own. Knowing your limits, asking for help, and accepting support is just as important as any other advice.