You’re going through life like any other family. Children grow into their teens and adulthood; aging parents need more assistance; pressures at work keep increasing but you’re handling it with aplomb.

Then suddenly, a family member starts behaving erratically – expressing strange thoughts and beliefs, perhaps preceded by a period of withdrawal and isolation. At first you discount it, thinking it’s a phase or a response to extra stress, so you wait till it passes.

But it doesn’t pass. It just gets worse. Your family member becomes more agitated, and starts behaving in uncharacteristically dangerous ways. They no longer laugh or smile – or when they do, there doesn’t seem to be a reason.

They talk about having special insights, supernatural powers, fears of being watched or persecuted, or other unbelievable things. They may start getting suspicious of you, accusing you of things you would never do. While this is going on, they lose interest in the things they used to enjoy, and stop interacting with friends. Their job or school performance suffers.

Out of concern, you point out how they’re behaving differently – and they dismiss your concerns, saying they’re okay. Eventually their behaviours become more risky, even dangerous. They stop working or drop out of school, and all their old friends have disappeared. Their spending gets out of control – they’ve spent all their savings and may even be in debt. As your concern increases, you plead with them to get help – which they continue to insist they don’t need. Nothing you do helps – and the stress in the relationship becomes unbearable, even while you’re doing all you can for them.

You look for ways to get help, but there doesn’t seem to be anything available – unless there’s an immediate danger, and that option looks horrible. You really don’t want to call police for your family member.

At this point, the crisis has enveloped the whole family. You feel like you’re walking on egg shells – or about to fall off the edge of a cliff. Even while you’ve sought out information about mental illness, you can’t imagine why it’s so damn hard to get help.

When or if you finally do get help – often because your loved one’s mental health has deteriorated to the point that police need to be called – you find you’re now cut out of any decisions. You’re likely not given any information about your family member’s diagnosis, treatment, or discharge plans – though you may be expected to provide care after hospitalization. This is obviously an impossible task that sets families up for failure, yet it routinely occurs.

If you can you relate to any of this, you’ve come to the right place.

• Families are key stakeholders in the design and maintenance of healthcare systems that provide for their loved ones, and consequently must have a seat at all tables where decisions are made about services and legislation for individuals suffering from psychotic illnesses.

• Families must be included as key members of a patient’s treatment team and provided the opportunity for input and information about their loved one’s illness and treatment plans.

• Clinicians working with patients who suffer from severe mental illness should receive science-based training and guidance on how to prioritize and maintain therapeutic alliances with families in order to facilitate better treatment outcomes for their patients with severe mental illness.

• Families need easy access to thorough psycho-education about severe mental illnesses.

Families in Canada having been lacking a national voice for too long. We intend to change that. We aim to bring about positive change through education and advocacy. We can do this if we work together.

You’re not alone. Join us and let’s make a difference in the lives of our most vulnerable.