Lived experience tips for managing schizophrenia

The symptoms and effects of schizophrenia are as unique and varied as the people who experience the illness. 

Likewise the way people manage their symptoms – including treatment methods, medication and self-care strategies – differ from person to person. The strategies implemented can also change throughout someone's life.

To spread some lived experience wisdom, we’ve asked our SANE Speakers to share their tips for managing symptoms, taking care of one's self, engaging with others and staying positive.

The enemy is the schizophrenia, not your friends

Recognising you have a problem is important. It’s easy to be sucked into thinking everyone else is the problem and blame others for what is going on in your head.

You cannot deal with schizophrenia alone.

Don't let your paranoia make you push your friends and support people away. Allow yourself to be helped. Schizophrenia can lead you down some dark pathways where you become isolated and suspicious.

Remember, your friends want you to be well and want to help you stay well. You may feel like everyone is watching you for tell-tale signs of madness, this is because they worry about you. Don’t let the illness fool you into believing your friends are out to do you harm. Reality check with them to establish what is real. Listen to your friends and family for signs of ill health. People who know you well will generally pick up on warning signs before you do.

Let others know if you’re hearing voices

Don’t let the voices make you withhold information from your friends. Let your friends know if your voices are giving you grief. Talking about them takes away their mystery and their power over you. Normalising the voices make them less threatening for your friends.

Minimize the stress in your life

Stress can be a trigger for an episode. If you can, avoid stressful situations and look after yourself. If you need to be by yourself find a safe place where you can be alone.

Make sure you get enough sleep

Sleep deprivation, or a change in sleeping patterns, can be diabolical for mental illness. Make sure you get regular sleep and enough to keep you well. If you are experiencing difficulty sleeping, ask your doctor for help.

Awareness of time is another issue that can affect sleep patterns. When you’re at home don’t rely on your watch or a phone to keep track of time, make sure you have clocks in every room of the house. They’ll act as visual reminders, encouraging you to stick to your routine.

If you struggle to wake up, try some ‘tricks’ to get you out of bed

Antipsychotics can make you tired, if you’re finding it hard to wake up in the morning try taking your medication early in the evening. Unfortunately, the trade-off is less energy at night, but you will be able to wake up at a reasonable hour in the morning. You can also try setting multiple alarms that are out of reach to act as extra motivation.

Don’t make rash decisions regarding your medication

Make sure you talk to your treating specialist, GP, friends or family before you make any changes to your medication. While you may feel better, or think the medication is causing serious side effects, any decision should be based on discussion, research and planning.

Don't be overwhelmed by medical jargon or negative connotations

'We are all individuals and we all experience different impacts from the illness,' says Karen, a SANE Speaker who lives with schizoaffective disorder.

'Find out as much as you can and never be afraid to ask questions,' she adds.

'To have knowledge about your condition and treatment is your basic right and ultimately will make navigating this daunting situation slightly easier.'

'Lastly, but by no means least, try not to lose your sense of self or the hope that there will be better days ahead.'

Find the right health professional

'The best advice I would give is to find the best doctor you can,' says Jenni, a SANE Speaker who lives with schizoaffective disorder.

'Find someone who understands you as a person, takes in what you say and believes in you. Someone you feel you can work with to get the best possible outcome for your future health. Remember there is always hope!' 

Make health your number one priority

If you don’t look after yourself then you pay for it. Learn your triggers and symptoms and talk to someone about them. Recognise your warning signs and get on top them if you become unwell. Acting early can prevent a relapse and help you refocus.

As well as monitoring your mental health, remember your physical health. Eat healthily, reduce sugars, fats and carbohydrates. Stop smoking. Exercise, even if it means walking to the next bus stop. Start small – walking around the block – and build from there. In time you’ll find more energy and feel better about yourself.

Reframe your understanding of ‘employment’

When searching for work, don’t rush into it. Seek advice from your psychologist, doctors and counsellors, they will tell you whether you’re ready for it or not. There are specialist job agencies that help people with mental illness, offering training, career advice and job placement.

Sometimes reframing what we regard as success and failure can have a major impact on our lives. Being a 'success' doesn't necessarily mean being part of the 9–5 workforce.

You may need a new definition of the word ‘recovery’

‘Recovery’ from mental illness can require a broader, more holistic interpretation of the word. Recovery doesn’t always mean you will return to full health, or even be the same person you were before your illness. But it does mean you can live well in spite of your symptoms. You can live a life that includes family, friends, hobbies, study and employment.

The word 'recovery' can imply an end goal, and doesn't capture the achievements required to stay well on a daily basis, nor does it reflect the times when you’re unwell. Taking it literally can set you up for disappointment. Think of recovery to be managing your illness.

Things get easier with time

Some things get easier with age. You’ll learn more about your symptoms, treatment, medication and what works for you as you get older.

You can learn from every situation. Whether good or bad, every experience is valid. It’s a lesson on how to handle your symptoms, society, or your participation in the community.

Remind yourself that the people who matter know what was going on and are still by your side. Not everyone will understand, and that's okay. Don’t put yourself down because of your experiences. They are different to other people's, but they are yours and no less ‘normal’.

Connect with others by joining a support group

Connecting with others who understand your experiences, and sharing stories and advice is a great way to learn strategies. Group members won’t judge you and they can be a great emotional support. PHAMS and Grow offer local support groups, or the SANE Forums are a 24-hour online anonymous community full of people from across Australia all managing their symptoms.

More to read . . .

• Schizophrenia factsheet
• Psychosis factsheet
• People like us - Hannah
• People like us - Sandy

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