So You’ve Had a Psychosis

I hope this page is useful for many folks, but it is psychosis survivor centered. So many resources are focused on everyone else in the situation. I want this to be focused on us.

First, a Hug (if you like that sort of thing). Little Liz, a smiling spiky haired line drawing has her arms open, ready for a hug.
Cartoon of Little Liz talking, she's moving her hands a bit, but is mostly stationary. Little Liz: You've been through or are going through a really big trauma. And if there's one thing I've learned One thing fellow psychosis survivors have told me. It's be kind to yourself. Be gentle with yourself.

Hi there, if you’re reading this page, you’ve probably had a psychotic episode or know someone who has. You might be grappling with new labels, like schizophrenia, schitzo-effective disorder, bi-polar or dual diagnosis. You might feel lost and adrift with no label in particular. 

You might have questions like, do I have Schizophrenia? How do I rebuild my life after psychosis? What is psychosis anyway? If psychosis is so common, where is everyone?

The good news is that there are better resources out there. The bad news is there’s still not enough resources and sometimes the resources that are there can be hard to find. When I was raw and wounded, grappling with my episodes (three between 2017 and 2020) a lot of resources were way too vague and often weren’t directed to me, the psychosis survivor.

Here are some tips, some are from my experiences, some are from other survivors, some are from academic research that I wish I’d had sooner.

Before we get started 

  1. I’m sorry this happened to you. Whether it’s happened once or multiple times, it’s a huge trauma.
  2. You are welcome here. It doesn’t matter how you came by psychosis, you are a valid human being. People can get caught up in origin stories and diagnoses, but at the end of the day a psychosis survivor is a psychosis survivor. We have a vulnerability, we likely have a complex web of vulnerabilities, we are whole human beings who are more than our psychosis.
  3. I’m not a medical professional nor a social worker. I am one person and that person is a super nerdy cartoonist and psychosis survivor. I’m not the boss of you, you are, take what I say with a grain of salt. Indeed, listen to experts, they have handy wisdoms, but they aren’t the boss of you either, you are (and if that hits an uncomfortable nerve, check out the concept re-institutionalization).
  4. This is a living document and will evolve over time. If you have suggestions to add to this resource page, you can email me at ordinary@lizargall.com

Tips for using this guide

When I was in early recovery, it hurt to read for a long time and I got easily overwhelmed. If you get overwhelmed looking at this resource list just pick one or two things. 

If picking something feels overwhelming, ask someone else to pick a topic or two for you. You could possibly even work with someone to do a Q-Sort Task approach. If your support team isn’t familiar with Q-Sorting you could even send them that video to see if they can incorporate that approach around other stuff too. I’ve had some frustrating experiences with CBT, so it was really nice to watch this video for the “Ooooh, that’s how CBT can be! That’s really different!” as well.

General resources

Mental Health Alliance Psychosis page 

  • I love how it chunks up topics and gives you a nice visual flow to look through. I wish I’d known about this when I was recovering and it was so painful to read!
  • If you don’t like this guide, I reckon they’d be the next good resource to go to.

Schizophrenia and Psychosis Action Alliance Support line

  • Free information resource line with specially trained team members who can provide personalized information and resources to people with schizophrenia-related illnesses and their families.
  • Don’t let imposter syndrome get in the way if you think accessing these resources would help you.
  • Email, text or call

Understanding Psychosis, from the National Institute of Mental Health 

NAMI’s new (or at least new to me) section on how to navigate your Mental Health journey looks great. It covers all sorts of topics:

Be gentle and kind to yourself

When I asked the psychosis subreddit for advice about what to put on this page that was the number one suggestion. You can see other suggestions at this post and I encourage you to add other suggestions.

What would you tell yourself immediately after psychosis?
byu/FloofieElise inPsychosis

Be patient with yourself. When I was recovering from my second, and most severe psychosis, a trusted friend with expertise said it’s amazing if you can get back to work in a year. It can take such a physical and mental toll. I pushed myself really hard, I was so anxious to be ok, that I got a high stress job within four months. I then immediately had my third episode and got fired. 

My second episode ended in January 2020, my third episode in mid 2020. I got a low stress, familiar job in December 2020. Thanks to my friend’s advice I felt like I was ahead of the curve, rather than beating myself up for taking so long. Once I got a job I was so drained I mostly rested after work, I could hardly do anything. I didn’t beat myself up about that, it was a natural, and protective thing to do. It’s important to be patient with yourself and recognize that when you are doing a big stretch (like getting back to work) it’s ok to rest afterwards.

Build routines that are simple. When I was in early recovery, my routine was to do one simple doodle wishing a person happy birthday every day. Then it was to do one simple doodle, plus one domestic task. If I emptied the dishwasher and did a doodle, that was a full day of achievement. Branesha Muller has said that writing a poem a day was her routine.

I love how Jessica Abel talks about creating templates for your days, which includes special templates for crisis/bad days. This is a pretty handy exercise for anyone. What to do when you can’t focus: Creating a crisis day template.

Learn/aka psychoeducation

There’s so much I could add here that I’m a little overwhelmed. It can be overwhelming. Learning can make a huge difference. You’re doing that right now on this page and there are a lot of great resources. 

Early on in your recovery, some types of learning might be hard or painful. Just be patient with yourself. If you hit overwhelm, try a different medium (I couldn’t do videos, but could do text, for example. You might be the opposite) or do it in little bits and pieces. Reading a page every two days is still more than nothing. 

Be kind to yourself if feelings get stirred up. If some resources feel too negative or oriented towards other people, move on. For these resources I’ve focused on ones that gave me better vibes.

Having your family, room mates etc knowing more about psychosis can make a big difference. Encourage them to learn about psychosis too.

On hearing voices

Anna Akana has some lovely normalizing stuff about hearing voices. First some fun silly info:

Then something a bit more serious about depression, hearing voices and feeling suicidal. Lots of people can go through this sort of thing.

Neurodiversity/ADHD/Autism stuff

I’ve found a lot of content about ADHD and Autism super handy when recovering from psychosis and getting my abilities back. Just like recovery resources can be handy whether or not you’ve ever experienced addiction, ADHD stuff can be handy for everyone as well. It can help with executive function, big feelings, getting mental flexibility and WTF do I do with my life. ADHD and Autism are two of the most commonly spoken about forms of neurodiversity, when really neurodiversity covers a lot of stuff. ADHD and Autism do carry less stigma and my current therapist knows a lot about Autism, which I think has been very helpful for my long term recovery. 

There’s definitely been times in the workplace where I’ve said “I’m neurodiverse in several ways” and spoken about Autism because it was safer to do that than to say, “It’s two years since I had a psychotic episode, I’m a emotionally brittle and over compensating.”  I particularly like ADHD resources as they’re often more positive, practical…. And suit my attention span ;-). Just a few of my favorite resources to take care of my brain are:

Extra nerdy stuff

If you’re a bit of a nerd, and your brain is up for it, here are some deeper dives! I must confess, it took me years of brain healing before I could read these things, but everyone is different. I’m really glad I’m capable of reading them now.

  • Coursera course on Psychosis from University of Michigan.
    • You can get a two week free trial account. There is a lot of reading and academic papers in this course, as well as survivors talking about their experience. To get the most out of the free trial, don’t do it until your mind is ready.
    • This course comes with a bibliography, so you could totally dive in, grab the recommended reading list and then get to that as time allows.
  • Recovery Oriented Systems of Care
  • University Libraries
    • They often have an obligation to provide support to the general public. You can call or go in and see what access you can get to electronic or physical journals like the Schizophrenia Bulletin.

If so many people have had psychosis, where are we?

When I was recovering, I found precious few examples of everyday folks who’d survived psychosis. I did a lot of my recovery during Covid times, so I couldn’t organically find people by going to NAMI meetings or anything. Online meetings made me feel even more lonely.

Here are a few places where you can see peers or find peer support:

  • Psychosis Community on Reddit
    • High volume posting space, some pretty great commenters
  • Schizophrenia and Psychosis Support on Inspire
    • Lower volume posting space, some pretty great commenters
  • Mega list of peer support groups 
  • Students With Psychosis
  • Schizophrenia and Psychosis Alliance Peer Support
    • If you have not been officially diagnosed with schizophrenia but have experienced psychosis, you are eligible to participate in the support groups.
  • Living Well After Schizophrenia
    • It took me a long time to have the emotional energy to watch Lauren’s videos. My mind was so raw and tired…. And once again I got imposter syndrome, because this was not my diagnosis. 
    • YouTube transcripts have made it much easier for me. Lots of good stuff there, no matter where you are in terms of Psychosis Vulnerability Syndrome.
  • CureSZ Foundation
    • Great list of survivors from diverse walks of life.
    • I found it very helpful to read the stories of quite different people who’ve experienced psychosis.
  • Hearing Voices Network
    • I always got too much imposter syndrome to go to this group, as I was more a delusions and paranoia gal, rather than voices and visions.
    • Their website has also improved since I was alone looking for stuff in 2020, so the language does feel a bit more inclusive.

What works well varies from person to person. Because my diagnosis was “Unspecified Psychosis” I didn’t feel like I fit anywhere. I wish I’d found spaces that worked for me sooner, just from a loneliness perspective. 

I love what Rob Scallon (amazing musician) says here about feeling like he didn’t deserve treatment while he was getting outpatient care. 

If you fall in the imposter syndrome category, please know it’s ok to get support, to get care, you’ve been through a massive, massive trauma. Early on I had several mental health professionals basically telling me to walk it off, and that led to more episodes. I’m so glad Rob Scallon was encouraged to keep getting care.

Recovery models often encourage a person to move on from their illness or their experience/illness being their primary identity. It can be part of you, if you’re in a serious car accident, you’ll never not have been in that accident, but forever having the identity as a someone who’s been in a car accident isn’t necessarily helpful. 

I think this is why some medical professionals didn’t help me find support groups. They didn’t want me to “learn how to be more ill” or “experience stigma” but it made me very lonely. If you’re in a serious car accident you can talk more openly about it, the comfort you get from other people, shared stories of how they dealt with it etc, helps you move on. It’s easier for your friends and family too, with a car accident it’s much easier for caregivers to ask for help, post something on facebook or get a meal train going. I think it’s the stigma that needs to change, the way labels are used needs to change, rather than not helping people find support groups.

Listen to your body about what works and doesn’t work for you. Get curious about what other support groups might be helpful for your specific experience beyond psychosis (be it an Autism support group, Adult Children of Alcoholic and Dysfunctional Families, an addiction recovery group, a writing group or subscribing to Vlogbrothers). You are more than your psychosis.

The Nature of Labels

You may have a label you’re learning how to live with. You might have experienced multiple labels and been frustrated by the somewhat arbitrary changes in categorization. You might not have a label.

Labels are cultural, social and political. That does not mean they are not real. Money is a cultural construct and I think we can all agree that it has an impact. The labels you get will depend on your:

  • Country
    • For Schizophrenia, for example:
      • USA uses DSM-5 
      • Europe uses ICD10
        • A broader, more optimistic label
      • Korea and Japan have got rid of the Schizophrenia as a diagnosis
  • Race
    • If you are Black, for example, you are more likely to be pathologized and heavily medicated for normal responses to abuse and trauma.
    • It wasn’t that long ago that trying to escape slavery was considered a mental illness. People protesting for human rights have been given the label Schizophrenia.
    • Race can also shape how many risk factors and traumas you experience that can lead to a more pessimistic diagnosis.
  • Gender
    • I know women who were diagnosed as Bi-Polar, only to discover Autism and Fibromyalgia were far more accurate labels. Young women are not supposed to have autistic meltdowns and of course you’re going to have periods of activity and collapse if you experience tremendous fatigue and pain.
      • This is no judgment on those that benefit from this label. Without this label we might not have Ellen Forney’s masterpiece Marbles. It’s just that Bi-Polar is a very big bucket that a lot of people get placed into.
    • Women experiencing pain and trauma have been pathologized and minimized for a long time (check out Anna Akana’s hilarious way of going into this). A dear friend of mine has supported quite a few women through situational mental illness caused by being raped and then being treated badly by the police. 
  • Socio-Economic status and class
    • Economic stability, support, access to humanizing services and secure housing can really make a difference when it comes to who gets diagnosed with what.
  • Culture, family history, how you respond to standard medications, how good you are at masking, social expectations, what services/research get funding, personal views/background of the person/s making the diagnosis etc.

There are a range of labels that a person can have if they experience psychosis, a whole spectrum of psychosis disorders! Personally, I’m fond of Psychosis Susceptibility Syndrome. I like it because it enables folks to work on other factors in a more granular way. Negative symptoms can look a lot like Autism, ADHD, PTSD, Depression, lack of resources etc.

Note: Problematizing labels doesn’t mean that medicine and care that comes from diagnostic labels won’t be helpful to you. Just take the actual label with a grain of salt. You can’t get medications based on Psychosis Susceptibility Syndrome (PSS). It’s a nice concept, but probably won’t get you all the care you need. I like to think of PSS as a big umbrella we can live under, and like Diabetes there are lots of degrees of vulnerability and what sort of intervention/prevention is needed. 

Great uses of labels

If you have a label, it can help you find community, access support and access different medications. It can be a relief to have a label that is meaningful, especially if you’ve been struggling with issues you couldn’t find the words for or have experienced misdiagnosis. 

If you’ve got a stigmatized label, or maybe a label that doesn’t quite fit, but what it’s what you’ve got, here’s my way of thinking about it. If you have the diagnosis Schizophrenia, you get to try new medications before anyone else! The area of need is so great. Some antipsychotic medications can give some people terrible side effects, so it’s easier to find folks with the condition who don’t take meds. This, to my view, makes it easier to get approval from ethics committees! 

When I first started on Caplyta it had only just been approved for Schizophrenia and my doctor had to get special approval for me to get it, as my diagnosis was “Unspecified Psychosis”. A few years on and it’s now being prescribed for Bi-Polar. 

Meanwhile the anti-seizure medication that became popular as a Bi-Polar med is in trials for use as an antidepressant… and Lamictal did nothing for my depression but was amazing for my anxiety.

So if you feel down about your labels, it can help to think of it as an access to resources mechanism:

  • Schizophrenia and related conditions folks get the option to try new meds first.
  • Bi-Polar folks get to try new meds next.
  • Folks with less spicy labels might need to wait decades before they get to try meds that could make a big difference for them.

Labels can be a liberation and a way of finding your tribe. If you look at any mental health label, there are wonderful and brilliant people, interesting peers and inspirations. There can be a truth around “Name it to Tame It”, especially if you’ve been worried for a while. Sometimes it can feel empowering to have something concrete or new options available – like for me, realizing that I had Asthma, not just a weird anxiety was liberating! How nice to have an anxiety that responds to albuterol.

If you don’t have a label, just know that this may well be part of the general recovery movement to not rush to put people in boxes. Your trauma is real. It’s ok to find inspiration from people who do or do not have labels. Your feelings are real and valid. You should be able to access support regardless. 

It’s ok to crave a label if you don’t have one. I know I did for a long time, as if it could somehow make me safer, make it more ok. It actually took a whole lot of grieving and healing over years to actually feel ok with not having a clear psychosis label. Psychosis can stir up all sorts of feelings about yourself and make you want to rush to answers. Just remember, it’s ok to use resources that have Schizophrenia in the title, even if that’s not your diagnosis. There are all sorts of revolutions occurring in the field of mental health, so just use whatever’s handy.

I think when you’re in the early raw years of recovery there are so many uncertainties. It can take a lot of strength to live with that uncertainty. It can be so hard when you don’t know what exactly is wrong and you don’t know what you’re capable of. 

Terrible uses of labels

There’s a chunk of research that shows that if you have Schizophrenia family labels on your medical record there’s a good chance you’ll be treated worse in some settings. 

Medical providers can get so fixated on that label that they don’t see the rest of the person. They can get fixated on positive symptom management, rather than the whole person. Imagine going to a dentist and saying “I think I need a filling, I think I have gum disease” and the dentist saying, “People who have car accidents often have wobbly teeth. It’s only been two years since your last car accident. Let’s focus on that.” Or maybe even refuse to treat you or give substandard care because they feel uncomfortable around people that have been in car accidents.

Sometimes we can do that to ourselves as well. We, and others, can just go, oh well psychosis survivors get anhedonia without giving proper recognition to: 

  • We’ve been through a huge trauma
  • Routines may have been disrupted (work, school etc, unemployment can be hard on any mind)
  • Relationships may have changed
  • You might have unstable housing or finances
  • Bullying at school
  • Difficulty getting or keeping a job
  • Having to deal with legal stuff (which can make anyone want to pull out their hair)
  • You might be in an environment/neighborhood/city where you don’t feel accepted
  • You might exercise less, especially if exercise has traumatic associations and raising your heart rate can feel scarier if you have PTSD
  • Your sleep might be wrecked!
  • You might have other untreated medical conditions:
    • Were you self medicating ADHD with marijuana and now no longer have that option?
    • Do you have metabolic issues, thyroid issues or Fibromyalgia?
    • Do you have Seasonal Affective Disorder?
    • Have you had concussions in the past/a form of Pseudobulbar Affect?

Getting on top of these can help with Depression and sometimes getting treatment for Depression can help you get on top of these.

When it comes to anhedonia, some of it is just healing. People say, just give it time. That’s great advice, but sometimes that’s not all of it. I remember about two years after my last Psychosis my Psychiatric Nurse Practitioner (PNP) asked me if I was happy. I had a bit of a melt down, “What is happiness anyway?!” “Do we as a society just have unrealistic expectations of happiness?” 

My PNP was very into curiosity and science, so he encouraged me to think of it more as, “Would it be nice to have more options?” Through his curiosity I got access to Nuedexta and actually treated my brain injuries. I feel like in a lot of settings I would have been told to just live with it (especially as my body doesn’t respond well to serotonin pathway antidepressants, I have the DNA test to prove it!)

Far too many people don’t have that kind of support and general quality of life can be written off. Life is reduced down to do you have psychosis Y/N? When we’re all much bigger than that.

Labels can cause biases and prejudice, and that includes biases and prejudices against yourself. It sucks when society gives you negative messages, but even worse when you do. You have to be with yourself all the time! Learning can do a lot to help you understand your own biases and push back at the biases that are put on you. I feel very lucky that the first person I knew who openly had Schizophrenia was one of the most emotionally well regulated people I’ve ever met and president of an organization. I feel lucky that during my recovery and uncertainty around labels I could think of awesome people like him, rather than media cliches.

If you find yourself automatically going, “Oh I can’t do <something aspirational>, I’ve got a label.” It can be kinder to think “What would I need to do to make X feel possible and safe?”

You are a whole person

As I might have said once or twice. 

Here are a few ideas that can help parts of you heal.

Body work

By body work I mean anything where a person helps you be in your body. That could be massage, physical therapy, acupuncture, reflexology, having your nails done or getting a haircut. 

I know for me I was in a lot of physical pain after my episodes and it was very painful to be in my body. Having a space where I could be and learn to be in my body again was very helpful. 

It felt pretty intense to start with. Basic massage or acupuncture would make me cry so much. Just sitting still for a haircut can be a powerful act of being in your body if you’re going through a lot.

Your insurance may be able to cover it, sometimes you can get cheaper rates at teaching schools.

It’s nice when you can have someone else help take care of you, it helps with feeling connected. Vitamin C (Connection) is very powerful (just think of the benefit so many folks have had volunteering at animal shelters! A way to be in your body and get connection.)

If having others help you be in your body not possible right now, giving yourself a nice foot bath or decadent body scrub in the shower can help you get into your body. I recently saw the City of Seattle posting about where you can get free hot showers, which pleases me for many reasons. Just having a shower can be exhausting, healing work. 

Give yourself permission to have a nap after you’ve had a shower. A friend told me that at her hospital they always scheduled physical therapy before showers, because after a shower folks had no energy. A hot shower can be a big deal in and of itself.

Nutrition

This is a big one. Especially as we can take meds that affect our appetite or cause us to gain weight. I’d always been a pretty healthy eater (thanks allergies), but after my episodes I sort of gave up for a while. I was on so many medications and supplements I just felt like more of a synthetic human, so I didn’t care about having a bunch of sugar for the tiniest sugar rush or feeling slightly less awful.

If you’re depending on soup kitchens etc, a lot of them can focus on cheap bulk calories that aren’t particularly great. Soup kitchens can be more about preventing immediate dying than healing.

If Covid lockdown hadn’t got in the way, part of my plan for healing was volunteering for a food bank. That way I’d have regular structure and a sense of purpose. It might be possible to volunteer at a food bank, co-op or community garden to get that sense of connection, purpose and get access to better food. This would be adding extra stuff to your day, but if you’re rebuilding your life post psychosis, it might be good structure.

Some folks are going full medical Keto and seeing amazing benefits. Interestingly enough, I haven’t gone full Keto, but I’ve been inspired by this new avenue of research to go low carb.

I was very suspicious of diet based strategies, but it’s been really interesting to see the science. I’m a little bit cranky that my diet of high fat, medium protein and low carb is so effective. My meds feel more effective and I feel like I’ve gone from getting by to thriving. I love my carbs, but it’s easier to say no to carbs when you can distract yourself with delicious fats. I crave some chips? Better grab some cheese instead!

There’s a lot of bad information out there, especially if folks are seeking payment for magical cures, but there are some reputable folks. Metabolic Mind is a nonprofit in this arena. Lauren Kennedy West talking about her journey with Keto and me realizing how much science there was (with blood monitoring and everything) was what helped me get into low carb.

Doing Keto properly is hard and it might not mean you can stop your meds. Meds in and of themselves are nothing to be ashamed of. I have a friend who got a diagnosis of Diabetes, he massively changed his diet and after two years he’s now tapering off his insulin medication. Another friend of mine has Diabetes and she will always need to take insulin, taking care of her diet helps her be healthy, but it will never be a cure. One person is not better than the other. They’re both human beings who are taking care of their health. Don’t get caught up in the idea that an improved diet means you won’t need your meds and that’s the only success condition. I could just mean you feel better and that’s a great result!

Exercise

I know for me, getting back into exercise was a little scary. Just raising my blood pressure a little could give me little flashback feelings, so I needed to pace myself. Four years later, I can do a three day Aikido seminar BUT, even then, I make sure I rest a whole lot before and after. 

You might need to learn how to be with yourself again. I was quite active in the build up to my psychosis, so I know I need to pace myself with stressors, physical and mental. If I’m putting myself through a lot of mental stress or experiencing a lot of grief, I need to not exercise too much. I don’t feel like I get mania, more that if I push through too much pain I can get mental rigidity, anxiety, and am vulnerable to a sort of cortisol collapse.

For some other folks or maybe me at some other time, more exercise might be handy to help stave off psychosis… if things are going more catatonic.

Anyway, exercise really is a powerful healing practice to do. It’s just a matter of finding the exercise that works for you. Martial arts are often a handy type of activity for neurospicy folks, it has some sociability but shouldn’t have all the team dynamics. For folks that fear that they might be dangerous, Tai Chi, Aikido or Yoga could be good and balancing (yes, a chunk of yoga was martial arts going underground because of British colonization!). A healthy dojo is probably more important than any particular martial art. Are they cultivating things in you that you like? If it’s making you more paranoid or not liking your body, that’s a sign to stop and go elsewhere.

Finding any excuse to be in nature, be it a hike or in a garden can be good for the soul. If you’re feeling wrecked, getting into your clothes, getting into the car, driving to a place, sitting outside for a few minutes and driving home again totally counts as exercise. Don’t be shy of giving yourself high fives, even if it’s for brushing your hair or cleaning your teeth.

When I was really exhausted, especially early on, I got a lot of comfort from the knowledge that a half hour very hot bath can provide many of the health benefits of physical exercise! Just make sure you can rest after a workout like that! Hot bath and then hop into bed!

Sleep

Oh sleep! This was a hard one, especially early on when it was hard to be in my body. So many sleep medications are addictive, so I wanted to avoid that, but also, sleep was so hard. I needed Melatonin and Trazodone and listening to audio books, and good sleep hygiene to even have a chance to sleep to start with. 

Trazodone was a bit scary as it can interact with other meds, so I’d often try to sleep without it, but if at 1am or so I still couldn’t sleep I’d take a Trazodone. Trazodone has a 4 hour half life. So I could give it a go without, take a pill if necessary and have it out of my system in time to get to work in the morning. 

When I was able to get back into exercise, that helped me sleep. Take a note of how your body responds. I needed to avoid exercise right before bedtime as it would wake me up, but exercise in the morning/a few hours before bedtime helped me sleep. It’s important to know your routines and what sleep hygiene works for you. I know I do ok if I don’t have screens after 10:30 and do even better if I can avoid screens from 9:30pm.

I felt really proud of myself the first night I was able to go without Trazodone. I think I only managed it because I went straight from a very hot bath to bed, but it was something I could build on. You’ve got to celebrate the small wins. Those little wins were the hardest, but now I don’t need melatonin to go to sleep and sometimes I don’t need to be listening to an audio book.

It’s also handy to look at your quality of sleep. Is your pillow ok? Is the temperature of your room ok (colder is generally better for sleep). Do you have sleep apnea? I have sleep apnea, but my CPAP has become quite frightening since my psychosis. Fortunately for me, a tongue device gets me a lot of the benefits. 

If you have sleep apnea, or think you might, Vik Veer is a great resource. He covers the whole gamut of options, from tongue exercises to surgical options!

Meditation

Meditation can be a mixed blessing, it depends on where you are at. Mindfulness meditation can help with recovery, but it can also be a bit risky if you’re on the brink. The most I’ve ever meditated in my life was before my third episode, meditation didn’t save me, I was meditating every day and trying so hard not to fall. 

Meditation can be healing, but be extra careful about what you select when you’re recovering from an injury like ours. I have found Headspace to be a lovely meditation app. The UCSD Mindfulness Institute has great free meditations, some of which are very short (1 minute!) and very handy if your brain feels shattered.

Structural inequalities and social determinants of health

Our societies don’t have even playing fields. Experiencing trauma, abuse, racism, classism, sexism, housing insecurity, jobs with low status/income/control, food deserts etc all have an impact. We are more than our circumstances, but it would be silly to deny that our circumstances don’t have an impact on our health.

If a person is in a car accident, how they recover will be shaped by their circumstances. The severity of the accident may be shaped by the quality of the car. The quality of road and traffic lights can increase the likelihood. How fast you have to go to work, how much physical therapy you can get, the physical and psychological security of your housing all have an impact on how you recover from any injury.  Everyone deserves fair treatment and support. Advocating for better treatment and support can be a political act. 

Note: this does not mean denying yourself support if you have more advantages, it just means being aware of your advantages and thinking about how others could have those advantages… be it de-stigmatizing mental illness, writing a letter to a politician or a thank you to advocacy groups. I was really lucky in a range of ways and that helped me have a much better prognosis and recovery. One of the ways I try to support others is being open about my experiences and how much support can help. If you have benefits that help, it’s nice to use them to help others. But that doesn’t mean you should be ashamed of or deny yourself of those healing benefits.

Navigating therapy

Therapy can be awful. There was a study I need to dig up sometime that talked about therapeutic strategies for people who survived aircraft accidents. The people who had counseling and therapy close to the event felt much more distressed in the short term. BUT a year later, the people who had received counseling had much better life satisfaction, post traumatic growth and trauma recovery. It’s worth a shot, even if you’ve had bad experiences in the past. Not all therapists are made equal.

There are more options for therapy than you might think. After psychosis three I was in a state of trauma where I was scared of seeing a therapist, but desperately needed to talk to someone. I saw a clinical social worker and she did a lot to help me process my feelings and be kind to myself. Having someone to talk to about your questions, shame, how to rebuild your life is very handy.  

Because of the mental health crisis, I couldn’t find someone that specialized in psychosis, but I was able to find someone who knew about addiction recovery. Recovery is recovery and most of the principles of addiction recovery apply to psychosis recovery. I was still in psychosis when I found my clinical social worker, but her website had a font I liked, she dyed her hair unusual colors and she knew about addiction recovery. She was a great match and I’m grateful for how she supported me online through the depths of Covid isolation.

NAMI has a good list of different types of mental health providers. If you have trauma around a particular kind of provider, you might find a different type that suits you! Therapists are a bit like primary school teachers, none of them are quite the same, some will suit you better than others and you’ll learn different things from each and every one of them. NAMI also has good information about finding other forms of support as well.

If you have a limited budget and are in the USA, the National Association of Free and Charitable Clinics can help you find a clinic.

If you’re not sure about what therapy could be like, or want inspiration about how your sessions could be better, the Psychosis Research Unit in Manchester has some lovely videos of therapy sessions. I find the accents quite nice to listen to as well. I particularly like the Goal Setting video.  CBT for Psychosis: Identifying goals using a Q-Sort task

Your therapist might not use these approaches, but if you like any of the approaches from the Psychosis Research Unit you could always send them a link and ask if they can use these kinds of strategies. 

Tips for medical appointments

  • It’s ok to bring other people to an appointment with you. This could be for help describing things, having them as a note taker or being a second voice if you’re afraid of biases from the medical professional.
  • It’s also ok not to bring people to an appointment with you or bring different people to an appointment. This might make a caregiver uncomfortable, but it’s important for these appointments to be about you. If you’re a minor you might want to talk to a school counselor or social worker about alternative people to come, if you’re required by law to have someone with you.
  • Write notes, or even a script beforehand. It’s ok to read something out, so that you can communicate clearly. This is especially handy if you have to talk to a lot of different people. I have a script I use when I’m seeing a new medical person of any sort. It’s a little bit startling to them sometimes, but that way we discuss my mental health on my terms. I talk about my warning signs, how they are typical and how they are quite atypical.
  • If you make notes for yourself in an ongoing way (I do it on my phone) it can be much easier than trying to think of what to say 15 minutes before the appointment.
  • When you have an appointment, think of the three most important things to cover. Prioritize those things, in case you only get to one of your topics. Don’t expect to be able to squeeze more than three things into an appointment and always start with the topic most important to you.
  • Writing notes during the appointment can be helpful.
  • If you don’t understand something, it’s ok to ask them to repeat themselves, or ask them to write it down for you.

Therapy and support can be quite diverse

Research has shown that focusing on emotional regulation, social skills and getting back into life can be more helpful than focusing on removing all symptoms. I’ve got so much benefit from working with someone who isn’t a psychosis specialist, but really great helping people with autism. If you hear voices, for example, if parts of you can recognize voices aren’t real, it might be more healing to work on how to have supportive relationships rather than get stuck on symptoms. Having symptoms doesn’t have to mean the rest of your life stop, it doesn’t mean you’re a bad person. Working with a seasoned pro around how to thread the needle of addressing symptoms while getting on with life can be quite handy.

My only caveat is that some people can get so caught up in helping you get on with life that they don’t spend the time helping you heal from the trauma. Psychosis is a trauma and if parts of your healthcare team don’t want to help you with that, you might need to find additional people to talk to. This is a place where peer support can be particularly handy, and peer support take on different shapes and sizes. Go to the “If so many people have had psychosis, where are we?” section for ways to find people who’ve been through it.

Impact of trauma when seeking help

There are lots of reasons why it might be hard to ask for or receive help. So I want to take my hat off to folks who are facing fear and doing so. It can be really hard and sometimes. Some of us have trauma from spaces that were supposed to heal us. Your trauma is valid. So many of us can have fatigue from being bounced around different doctors, medical systems and diagnoses.

If you can, I recommend interviewing potential members of your health care team before you start seeing them. How people respond to the interview can be very insightful. Example interview questions could be:

  • I have XYZ trauma, how will you have space for that/help me/not retraumatize me?
  • I want to work on XYZ topics and not get side tracked by ABC, can you work with that?
  • I’m a patient that likes to self educate. Will you dismiss me/treat me with contempt if I talk about research or bring in extracts from journals?

It’s handy to proactively create a good healthcare team when you’re not in crisis. The healthier you feel, the better equipped you’ll be to build relationships if things should get bad. Science recognizes that prevention is better than cure. Pre-hab is better than rehab. And it’s better to work on your trauma when you’re feeling stronger than at your lowest point.

I have seen a woman with half her teeth split in half after her boyfriend kicked her in the face refuse free dentistry because her trauma around health professionals was so severe.

I know folks who have starved themselves and risked homelessness rather than collect unemployment benefits, because they grew up in foster care and feared anything that involved the government and the possibility of reinstitutionalization. 

Trauma is real and impactful, but I hope you can find ways to navigate it that mean you can get the support you deserve.

If you think your experience isn’t big enough to warrant help/sustained help

There can be a lot of pressure to just get up and walk things off, not just for mental injuries. We can face that externally and sometimes we can 

I have seen someone whose doctor had ordered them to do complete bed rest because both their ankles and one wrist shattered, making a stir fry dinner for everyone, despite everyone pleading with them to rest. Avoid doing that to your internal injuries.

So many people dismiss their own pain because there were other people suffering more, and at least they were alive. I hope you feel that it’s worth them getting the dentistry, rest or a secure income. You are also worth getting medical support, rest and a secure income.

As Anna Akana points out in this funny yet poignant video, self-silencing can literally make you sick. 

Therapy can help you find that balance of having a voice, while not having career limiting meltdowns. Often for psychosis survivors our underlying concerns and feelings are legit, but the volume with which we have them can prevent us from being heard and sometimes make us sick. Figuring out how to manage emotions (for me it’s a combination of medication and skills) doesn’t mean silencing yourself. It actually means finding more nuanced ways of being heard.

Medication management

We can all have really different ways of responding to medication. Providers will often have a preferred sequence of medications they like a person to try. It’s pretty common that the first medication won’t be the best fit. Using an app or notepad to track how you respond to medication can be really handy.  Keeping your own records is especially handy, for yourself and for your medical provider. 

I’m a big fan of genetic testing for those of us unusual enough to experience psychosis. Especially as some of our meds can be riskier and it’s good to be sure a med won’t make things worse! For me, some of the meds commonly regarded as gentle on the system meds give me bad side effects, while other meds that have higher risk of adverse reactions are fine for me! There are some reputable genetic tests that aren’t super expensive, given the quality of life boost and are free for medicare, medicare part b and medicaid.

Building a routine for how to take medication and supplements is very helpful. I like to build in a reward mechanism. For example, I seldom forget to take my evening meds because I call 9.30pm time for dessert! I never used to be much of a dessert person, but now that I take evening medication it’s a little treat. Medication time is a thing to look forward to!

It can be handy to have crisis medication as well as maintenance medication… especially if your dosage changes in either direction or you’re going through life stuff. Me for example, should I ever feel bad warning signs, have some Olanzapine in my bedside drawer. It’s not my normal med, but if things get bad I can rest deeply on this med, which will buy me time to get to an emergency appointment with my healthcare team.

Rebuilding/Building a life

Recovery from psychosis is a shock to the system, for you and the people around you. It’s handy to think of recovery as a process, rather than an end state. There are lots of recovery oriented principles around drug addiction that apply equally well for folks with mental health challenges. Don’t be afraid to use any recovery resources out there, like my wonderful social worker therapist :-).

Dr Hallowell (a leading expert in ADHD) loves to talk about the healing power of Vitamin C aka Vitamin Connection. Connection can be profoundly healing, but it can be disrupted by psychosis. Connection can be connecting to nature, to animals, through social clubs, through hobbies, church groups, 12 step, the gym or getting to know your neighbors. I think the important thing is not to depend on just one person for connection or feel like you have to be friends with everyone (especially if co-dependence has ever been part of your life).

Making amends

There may be people you’ve hurt during prodromal, acute psychosis or recovery period. Don’t rush to make amends. Give yourself time to process what you’ve been through and understand what it brought up. While some delusions could be triggered by random songs or word associations, others may be brought about by deeper issues. 

If you rush to paint over it, you might deny yourself the chance to get interesting lessons from the experience and get to Post Traumatic Growth. It could be that your psychosis amplified things into metaphors, a toxic friendship became a fear that someone was literally poisoning you etc. So take time (ideally with a therapist or peer support) to get to know and understand all the layers to your delusion, what was totally made up and what contained a seed of truth.

Don’t rush out to seek forgiveness if forgiveness is unlikely. Don’t rush if it might cause harm (to you or others).

It’s important to take care of yourself and rebuild who you are. I’ve always loved AA’s Making Amends Steps, it’s great structure whether you’re into 12 step or not (and remember, don’t deny yourself great recovery tools out of some sense of stigma, fear of how you might be perceived or what diagnostic labels you have, recovery is recovery). 

Made direct amends to such people wherever possible, except when to do so would injure them or others.

Except when it would injure them or others.

But also note, it’s Step 8 and 9. Don’t try to do this too soon. There’s a whole lot of healing that needs to come first.

Be gentle with yourself and others, and that includes not trying to rush into “fixing” things too fast.

Going back to school

I was in my late thirties when I had my first episode, so I don’t have direct experience of this, but I can say school can really suck for anyone who’s slightly different. Ideally folks should work on a non-stigmatizing back to school plan where you feel supported and safe, but the world isn’t always built that way.

For me, I survived school by avoiding frenemies. I was neurodiverse and that made me a target in different ways. One of my strategies was to be slow to trust anyone who was too intensely friendly straight away. If a person kept turning up and being friendly that meant it was more likely to be real, rather than some fad or potential manipulation. Avoid people that say cruel things about their friends. If they say that in front of you, they might be doing that about you when you’re not around. 

Basically I did a lot of things to avoid paranoia, which can be hard with the gossips and power dynamics of school. I think that did a lot to protect my mind and may have prevented me from having an episode sooner. I spent time with people who supported me in a sustained way, not a flavor of the month kind of way. If that meant I was alone a chunk of the time, that was better than being around frenemies. Choosing not to spend time with frenemies also meant that I had more room to make friends with nicer people. I wasn’t distracted and wounded dealing with all the frenemy drama. 

Choosing to be alone, rather than with people who aren’t great for your mental health does not mean being withdrawn and shrinking. In fact, shrinking and being a people pleaser might make paranoia worse/more likely. Hold your head up high, be the wonderful weirdo you are and know that if people are cruel or gossips, it’s because they are small, scared, shallow and feel sorry for them.

Anyway, those are my survival tips, your mileage may vary. Kaz Cooke’s Girl Stuff, your full on guide to teen years, is a great read. Some of the stuff might be gender specific, but a lot of it applies to any gender and it’s good stuff if you ever want to spend time around women. I’m a strong feisty woman in my forties, and I still find parts of it relevant.

Finding work

  1. Don’t push for it too fast
  2. Getting a job can be good for your mental health
  3. Be kind to yourself when you do have a job

Rushing back to work way too fast can be a bit like getting out of a cast too soon and running a risk of re-injury. Staying in the cast too long can cause muscle wastage aka lower self esteem and fear you’ll never be able to get a job.

First things first, it’s a tough labor market right now. Don’t worry about an employment gap. With the recent layoffs in tech and whole industries destabilized by AI it’s really normal to spend time getting work.

The job you get now is not the job you’ll have forever. There are all sorts of blue collar or “basic” jobs that are full of honor and bring value. I know someone who gets down on himself sometimes because he “just does” in home care for elderly folks and people with disabilities. Society doesn’t value these kinds of roles enough, when him turning up and having a cup of tea can be the best part of that person’s day or week.

My career has had some ups and downs, I’ve been unable to work for an extended period because of my visa and so on. I’ve noticed that the longer I’m unemployed the lower my self esteem gets and the harder it is for me to imagine having any kind of job. Back in Australia I had high stress white collar jobs, when I finally got my green card in America my self esteem was so shattered and the job market was so tight it took friends to get me jobs doing manual labor and cleaning houses. And I’m proud of the work I did, taking care of garden beds etc. I had great colleagues and being able to do that kind of work with my hands was healing.

Getting through summer and winter is tough when working outside all the time and I was glad to get the pay bump when I got a desk job again. These days I’m a technical writer, when I’m not drawing comics or writing essays, but I look back on those times with fondness. I had good colleagues and a nice boss. Manual labor is honorable work and it helped heal me when I was at a very low point in my life. 

In terms of finding the right job for you long term, I’ve found ADHD coaching very handy. A lot of ADHD stuff can be quite relatable for anyone who’s survived psychosis. It might be a new thing, but ADHD resources have a lot of great advice for everyone and especially folks whose executive function has taken a beating.

Once you have a job

If things get emotional, remember to breathe and take a moment to gather yourself. It’s better to say “excuse me, I need to go for a walk so I can reset” rather than blurt something out you might regret later… I know this all too well!

Honor your body’s need to rest. Getting back to work can be exhausting and stir up a lot of feelings. Just using your brain that much, being in the context of other people, going through the learning curve. Make sure you rest after work and have contingency plans if things trigger you.

Minimize the amount of stuff you do that is not work while you acclimatize to work. Can someone else do the laundry? Are there easy frozen meals you can have? Can someone else organize a meal train for you?

What to do if symptoms emerge

One of the hard things about having had a psychotic episode can be knowing whether you’re really recovering or if you’re going to have another episode. 

I thought I self recovered from my first episode, but with hindsight I can see that I recovered from the florid/acute psychosis, but I didn’t fully recover. I thought I had PTSD, when really it was paranoia and life was very hard. While it was awful and I wish I’d got better in any other way, in some ways I’m grateful that I got the second episode as living with that level of paranoia was awful. I used to study statistics to convince myself of coincidences and was easily haunted by the past and possible disasters. I thought it was something I just had to live with and my life is so much better now I’ve fully recovered and shed that burden.

It’s very helpful to take note of what your personal signs are, Lauren does a great job of describing what signs could be.

It’s also helpful to write down what are parts of your life that are less than ideal. Maybe if I’d sought out a psychiatrist to work on my “PTSD” I might have never had another episode. Maybe not, but rather than self silence, it’s handy to write down what isn’t working for you right now and get support on that, regardless of whether it’s psychosis related.

Lauren’s description of the Prodromal phase is very handy as well. Like she says, if you have these symptoms you might not be falling into psychosis. It could be all sorts of things and regardless of what it is, it’s good to get it checked out.

Creating a relapse plan

People don’t have fire extinguishers and fire drills because they’re planning to have a building fire. They do it so that if the unthinkable happens everyone knows what to do. Creating a relapse plan with multiple stages is helpful as well. What that looks like will be personal to you and what resources you have.

This is what my prevention or relapse plan looks like:

  1. I am aware of my early warning signs, if I get any of them I rest and recalibrate.
  2. I have given my health care team and people close to me certain code words that I use when in psychosis. I can appear to be self aware, but if I make certain statements I am most certainly not ok and either falling fast into psychosis or already there.
  3. I have an emergency medication I can take if I get so distressed I can’t sleep for an extended period.
  4. We have friends who know about my episodes so my partner has people he can ask for help and talk openly to.
  5. I’m fortunate enough to have a partner and friends I deeply trust. I have given him (and a friend as backup) power of attorney that includes involuntary committal. If I need to be hospitalized I need to be hospitalized, and I’d rather the people I trust have the ability to act with confidence.

Conclusions

Phew! If that feels like a lot, it’s because it is a lot. If anything feels overwhelming, make sure you just pick one or two things to focus on and take notes (I like to do it on my phone) so that you can see patterns, save energy and time.

The good news is, if you actually get through and practice all that is here, you’ll probably be better adjusted and more functional than most human beings.

I hope this was helpful to you, please pass it on to others if you feel it might be useful to them. Feedback is welcome in the comments or you can email me at ordinary@lizargall.com.

Put one foot in front of the other, even if it feels hopeless. You’ve got this.