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People who have psychosis can get better, they can feel better and reach their goals. I want to get that out of the way because it is important to say (especially if you don’t read past here) but, as I am sure you guessed, it is a little more complicated than that, so I am going to do my best to explain what recovery can look like below. As I’ve mentioned before, psychosis can be present in many different diagnoses, and the specific diagnosis does impact the trajectory of someone’s recovery. With that, please know that a great deal of the information below relates to bipolar disorder, schizoaffective disorder, and primary psychotic disorders which includes things like schizophrenia, schizophreniform disorder, or brief psychotic disorder.
The Recovery Breakdown
When I worked on an inpatient psychiatric unit we would explain to families that recovery statistics can generally be broken down into thirds. One third of our patients would present with a psychotic episode and never have another, another third would need ongoing treatment but would be able to successfully live their life, and the last third would fair the worst, requiring more intensive management, more hospitalizations, and limited independence. It is important to mention that that last group often lacks support, has fewer resources that allow them to access treatment, and/or has a long period of untreated psychosis, making it more difficult to treat in the present.
The majority of families receiving that information, were there to be supportive, learn more, and caught things early on, placing them into the first two thirds. I can imagine that people reading this blog are equally as engaged or active in treatment, putting you also in that category. That being said, even with the largest most loving support system and even if the long term trajectory of an individual’s life is smooth sailing, the initial stages of a psychotic disorder can be bumpy. There are many factors that might impact the ease and success of early treatment but one of the biggest is impaired insight or anosognosia.
Anosognosia
Anosognosia is the medical term for lack of insight or the reason why your loved one doesn’t understand that it would be weird the FBI has randomly started following them or why it doesn’t make sense that someone has put a chip in their brain. This is not the same as being in denial but rather a complete lack of awareness of the illness, their reality truly does not match yours, and it is often seen with psychosis. Imagine if you felt fine, you knew that the things going on around you were real but everyone you know is telling you that you are insane and need medication, I don’t think I would be particularly motivated to get treatment either.
As a loved one, how do you manage this? Hopefully seeing this blog can save you time/heartache but my biggest piece of advice is, fighting or telling someone they are crazy, it isn’t going to work and it is going to make your life harder. Obviously, if you or your loved one is in danger, call 911 or your local mobile crisis, so that you can have professionals there to help but if this is just your daily battle about doctor’s appointments and medications, this is for you.
Your job is not to convince them that they are unwell, your job is to stop, listen to understand so that you can empathize, and work on finding common ground. Psychosis is scary and having someone on your side, especially a loved one, can be invaluable.
Which do you think sounds better between these two “oh you mentioned that the bad vibes you were getting have gotten better since starting the medication, maybe it is helpful” or “this is going to help with your delusions because bad vibes aren’t real and there is no way you can feel them”? As clinicians, we often work with individuals to find common ground for the treatment, usually about medication, by agreeing on what it helps with (“people say this helps them feel less anxious”, “it also can help with sleep”, or “it might help organize your thoughts”). It is important to mention that this is not an effort to manipulate or lie to someone, but to make a partnership and plan based on their language, so that they can feel less distressed and move on with their life.
Dr. Amador, a psychologist, has focused his career on the topic, you can watch his TedX talk here, read his book here, and look at his cheat sheet on the method here.
Evolution of Goals
Another thing I want to mention, because it comes up frequently with families, is that an individual’s goal or life path might change after or because of an episode but that does not make it any less important. I often hear parents mourning the loss of their child’s goal to be a ____ (fill in the blank with doctor, lawyer, accountant, etc) disappear or change to something less noteworthy in their eyes after a diagnosis or illness. And while it is absolutely ok to have a feeling of disappointment /sadness/whatever during this change, it is important to remember that this new goal, plan, or path is valuable and just as meaningful. Reaching new, maybe smaller, goals after an episode leads to confidence and likely to bigger goals being set in the future.
What Defines You
Recovery from an episode can take weeks, months, or even longer and this process should not be done alone but with the support of a treatment team, including a therapist, medication provider, and hopefully additional wrap around services (peer recovery specialists, education and employment specialists, case management, etc). This team can help support and educate both the individual and the family/support system. And with on going support, the individual can begin to make sense of what happened, why it happened, what they experienced, and what that means for them now. It is important for those involved in this recovery process to remember that this episode or illness does not define someone, only they can do that with their goals, relationships, and how they decide to move forward.
Recovery from an episode can take weeks, months, or even longer and this process should not be done alone but with the support of a treatment team, including a therapist, medication provider, and hopefully additional wrap around services (peer recovery specialists, education and employment specialists, case management, etc). This team can help support and educate both the individual and the family/support system. And with on going support, the individual can begin to make sense of what happened, why it happened, what they experienced, and what that means for them now. It is important for those involved in this recovery process to remember that this episode or illness does not define someone, only they can do that with their goals, relationships, and how they decide to move forward.
Original post, and more, can be found here.
