5 Things Survivors Should Know About Psychosis

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A montage of things survivors should know about psychosis.

Part 3 of the “15 Things You Need to Know About Psychosis”

Phew, it’s been waiting in the wings for nearly two years, but here it is. My top five things survivors should know about psychosis.

The previous two posts focused on medical professionals and loved ones, but this one is solely about us. People who have lived with psychotic symptoms. The sufferers, the survivors.

Our experiences are all unique, but I think the following five things are significant enough for all of us to keep in mind. That being said, these are based on my experiences of psychosis and my recovery, so I understand that not everyone will gel with them.

My only ask here is that you read through with an open mind – maybe some things will help. I hope they do.

Now, with all that out of the way, here are my top five things people with psychosis should know:

Sections in this Post:

Don’t Just Stop Your Meds

There has been much debate online – particularly over the last few years – about the value of medication for mental illness. Much of this has become polarised: one camp swearing by meds as the only cure and another warding off all medical interventions.

Each extreme, however, leaves a lot to be desired for those who are suffering on a daily basis. The truth, then, must lie somewhere in the middle.

For me, medication helped a vast amount in the early stages of recovery. I needed it to numb the symptoms enough so I could begin therapy and get back to work. But ultimately, it has been my weekly therapy work, as well as taking measures to improve my resilience and finding outlets, that has helped me grow and change. I think this “centrist” approach is probably similar for many people.

Wherever you land in this debate, if you are currently on medication – be it short- or long-term – it is vital that you don’t just stop taking your meds.

I repeat: Don’t. Just. Stop.

Yes, the side effects suck. They might make you feel agitated or like a walking corpse. I can relate to that wholeheartedly. But every time I’ve thought, “Ahh, I’m better now, I don’t need these anymore”, I have ended up back in nightmare land really fast. Sometimes overnight.

Medication does affect your brain chemistry, so a swift removal can cause withdrawals and a quick decline in functioning (especially if your body has gotten used to having them in your system). It can cause a sudden surge in symptoms.

This is not to say medication is forever. One of my goals was to be able to manage without medication because I hated the side effects. If you can’t stand the side effects, speak to your psychiatrist or care team about other medications you can try. If you want to come off medication altogether, work with your care team to decide on a schedule to taper them down.

But, no matter what you see on social media and blogs, or hear from others, don’t just quit your meds.

Just Because Your Experiences Aren’t Real, Doesn’t Mean Your Reactions Aren’t Valid

Psychosis is one of the most awful and traumatic experiences I’ve ever had to go through, and I honestly wouldn’t wish it on my worst enemy. One of the most challenging aspects is not being able to explain it to other people.

Because when we’re lucid, we know the things we see, hear and believe are crazy. We know when we’re well that those things couldn’t possibly be true. And yet, when we slide into an episode, that truth goes out the window – we no longer feel like the crazy is crazy. It seems possible and so, so real.

Hearing someone say you should kill yourself doesn’t get any easier to deal with when a well-meaning friend says, “But it’s not real, stop listening to it!” It’s horrible. It’s scary. It makes you despair.

And it makes it worse when you’re accused of being dramatic or unstable because you can’t keep your emotions in check.

So, let me say that your feeling this way about the things you hear or believe is perfectly valid. It’s understandable. If any “normal person” felt their life was suddenly in danger, they’d feel desperate, hopeless, and overwhelmed too. You can’t just “pull yourself together” if you feel your life is being threatened.

Now, this doesn’t give us a free pass to behave any way we want – if we’ve hurt or damaged someone or something, we should make amends when we’re better. But having feelings? That does not need an apology.

Your experiences may not be real, but that doesn’t make them any less damaging or traumatic. Your thoughts and feelings about them are valid.

You Are Not Your Label

Psychosis can be a part of many different diagnoses. And, like medication, the structures by which professionals classify illnesses are a subject of enormous debate.

For some people, diagnoses can be a huge help (Bipolar Nerd Girl has done a fantastic post here about her experience of receiving her diagnosis, and the ways it helped). However, others find that these labels don’t adequately explain their experiences or are too restrictive and shut off treatment pathways.

Understanding your diagnosis can be of immense help. Google it, discuss it with your care team, and try to learn as much as possible about it. If you feel it’s useful, then great. Hopefully, it will help in getting you support.

But if you feel like this has slapped a “bad person” label on you, if you feel like you are being judged because of it, try to remember: this label is not you.

You are an individual with differing moods, thoughts, feelings and behaviours. A diagnosis will never be nuanced enough to capture who you are. Try and put it to one side if you can. See it as a means to an end in getting you the support you need within the healthcare system.

This might sound cynical, but diagnoses are how treatment paths are decided for now in the UK. Sometimes you have to pick your battles.

But what if you can’t put it aside? If you feel that the diagnosis damages you and professionals stigmatise you as a result, challenge it. Speak to a charity. Get a second opinion or review. Get an advocate if you can.

This path isn’t easy, but if you feel the harm the diagnosis is doing is greater than the cost of the time and stress that challenging it will bring, then you should try.

Because, at the end of the day, your label is not you.

Consider Going Private If You Can

As a caveat, I know that not everyone will have the opportunity for private treatment. Too many people are being left behind, which isn’t going to change anytime soon. Our NHS is in a state of crisis. It has been for a while, and this only seems to be getting worse.

There are too few resources for the many people that need them, and this constant pressure means that all the NHS can manage is a one-size-fits-all approach. There is no continuity of care. Where there is therapy available, you might spend years on a waiting list before getting the support you need. It feels anything but person-centred.

Because of this, I am an unapologetic advocate for pursuing private psychotherapy if you can. I have found it more consistent, more compassionate, and ultimately more helpful than our NHS services.

I was so, so lucky that my in-laws were able and willing to pay for my first few months while I was off sick. That £40 a week was a lifeline and one of the many things I’ll always be grateful to them for. As soon as I got back into work, it became part of my budget, like my bills.

Over time, he helped me sort out the jumble of crap in my head and learn some coping strategies. He helped me sift through the dirt of trauma and find little golden nuggets of meaning and clarity. This has been utterly life-changing. Over the past few years, I’ve gone from a complete wreck of a human to finding myself in the best place I’ve been in my life. Five years ago, I couldn’t see any future for myself other than an early death. Now I’m finding I can truly live.

The reason it has been so influential? Time. He has the time to devote an hour to me every week. He listens to all of my rambling, all the shitty thoughts and good ones, and helps me sort them out.

To reiterate, I know not everyone will have the means to (and this angers me beyond belief but is a subject for another day).

But if you can afford it – or you know loved ones can help you with it – consider going private if you can. It is well worth the cost.

You Can Beat This – But It Won’t Be a Quick Fix

This would be the most significant piece of advice I’d give to anyone going through serious mental illness.

My recovery has been ongoing for over eight years now. There are still days when voices make my life difficult, still nights when I can feel the tendrils of delusions playing with my mind.

I’ve learned that recovery is a cycle, a journey (as trite as that sounds). We fall. We get back up again. We stand and start walking on our own. We stumble again but get up quicker next time. And so on.

There are numerous elements to “well-being”, and they will be different for everyone. I’ve had to cut toxic people out of my life, I’ve had to negotiate with my job to change my shifts, I’ve had to fork out for private therapy, and I’ve only recently come off medication altogether.

In 2019, we had three bereavements in the family. When my Nan died, I could feel myself sliding. I knew I was at risk of going down the rabbit hole again – after over 2 ½ years of no acute episodes. After all that work, I couldn’t bear the thought.

So, I put extra measures in place. Took a bit of time off. Pursued something specifically for me. Reached out to those closest to me for support. There are still adjustments that I have to make, and I’m still learning what works best for me.

That is how recovery works. You don’t just suddenly get better; you learn what makes you better and find ways of implementing it. You find things to hang onto. You try. You keep bloody trying. It’s hard work, but ultimately, it is so worth it. So when you stumble, try and find compassion for yourself. You’re getting there.

So please don’t lose hope – you can beat this.

Things Survivors Should Know About Psychosis

If you’ve read this far, thank you. I hope you’ve found the info within the 15 things helpful or interesting.

Of course, all of this is very personal to each of us who experience psychosis, so I encourage you to take what you need from it and leave what you don’t.

I’d love to hear your thoughts below – what would you want others to know about psychosis? Are there any sections which resonated with you?

As ever, thanks for reading.

Until the next post!

Bron @ LBT x