I’ve seen a few of these types of blog post around, for various mental health problems, so I thought I’d do one for schizophrenia. These are ten things I’ve heard from people that, although sometimes said to try and help, have been extremely unhelpful.
1. That’s the one with multiple personalities, isn’t it?
I’ve heard this one twice I think, in hospital from other patients. Schizophrenia is NOT multiple personalities, despite the common myth. Multiple personalities is the disorder now known as Dissociative Identity Disorder, previously known as Multiple Personality Disorder. The myth stemmed from the translation of the word schizophrenia, which translates from Greek to mean ‘split mind’. This doesn’t mean that the mind is split into different personalities, it means that a mind is split from reality.
2. Have you ever been violent towards anyone because of your illness?
I’ve heard this one a few times and the answer is still no. Violence with schizophrenia is the exception rather than the rule, despite all the stories of schizophrenia and extreme violence in the news. Let me put it this way. About 1% of the population suffers with schizophrenia, which would mean that as there’s approximately 63 million people in the UK, there are around 630,000 sufferers. If we were all violent, or even if the majority of us were violent, do you not think that stories would be on the news more often? So don’t ask this question. Odds are, the answer is no.
3. Have you tried not listening to the voices?
This one is something that has been said in the nicest possible way but is still highly irritating to hear. If voices were as simple as just not listening to them, don’t you think I would have done it? Voices aren’t like people. You can’t walk away from voices, they follow you wherever you go. You can use music or television to try and drown them out but I’ve had voices that decided to get louder when I turned my music on. I do everything I can to try and drown out voices, but I can’t just not listen to them. It’s not that simple. By the way, this point only applies to those who actually hear voices, as not all people with schizophrenia hear voices.
4. Just take the meds, then you’ll be OK.
This one makes me want to tear my hair out. Some people seem to think that treating schizophrenia is as black and white as the meds will automatically help all people with the illness and they’ll be OK forever providing they just take them. Wrong. The usual type of medication for schizophrenia is the antipsychotic. I’ve been on nine different antipsychotics so far, of which seven have been used in the longer term. Of those seven, three had unbearable side effects and didn’t work, two had bearable side effects but didn’t work, one seemed to work but had side effects that both myself and the doctors were concerned about and the seventh one, the one I’m currently on, I’m still in the early stages of taking. I don’t know yet whether it’s going to work and although so far the side effects are bearable, I’m only on a low dose.
Medication with schizophrenia, as with many other mental illnesses, is trial and error. Overall, I’ve taken fourteen different psychotropic medications for various reasons, and so far, only four have helped. None of them ‘cured’ me, they just took away part of what I was going through. Schizophrenia is not as simple as just taking medication, and many people have actually been cured without using medication. The treatment for schizophrenia should be as unique as the person themselves.
5. Why did you come off medication?
This question is usually accompanied by a look that says, “Are you stupid?” Like I said in the previous point, schizophrenia treatment is not as black and white as taking medication and being miraculously cured. The reason I’ve had for coming off medication was because of the side effects. Some side effects truly are unbearable and no person would want to suffer them. I wrote about this in more detail here.
6. How can you believe something so stupid?
I’ve had this one a few times, once from a psychiatric nurse. Delusions are another common symptom of schizophrenia and to most people, the deluded belief may sound extremely farfetched. To you, it may be clear as day that the CIA is not tracking Joe Bloggs but to Joe, he is terrified that his every move is being watched by the CIA. Telling Joe that his belief is stupid is not going to help and it will just make him think that you’re not going to help him. Instead, just provide a place for Joe to talk about his beliefs if that’s what he wants. Don’t push him into talking about his beliefs though, as this can upset a person even more. Again, this point only applies to those who suffer with delusions as not all people with schizophrenia have delusions.
7. Why won’t you talk about [insert symptom]?
This one has been said to me both in annoyance and in kindness. The answer is always going to be the same: “Because I don’t want to.” I’ve always hated talking about things the voices said to me. Once when I was in hospital, a nurse asked me what one of my voices thought of her. Immediately, the voice told me what he thought of her, something that I will never, ever repeat. She could tell by my face that the voice had told me something, and she tried a few times to get me to tell her what he’d said. She only let the issue go when I burst into tears and begged her not to make me tell her. I HATE talking about things the voices say. Sometimes I hear commands telling me to harm other people, things that make me feel ashamed to hear. I definitely don’t want to talk about stuff like this so please don’t make me. You WILL upset me.
8. You just need to get out more/get more exercise.
If I had a pound for every time I’d heard one of these, well, I’d have very heavy pockets. I KNOW that it’s not good to sit in the house all day everyday and not go out. I KNOW that everyone needs exercise. Please stop telling me. Forcing me to leave the house when I feel anxious is only going to make me feel worse. I’ll get out when I feel ready to leave the house, not before. And as for exercise, it’s not a cure-all. For some reason, anything more than a brisk walk provokes strong suicidal thoughts in me. I used to go to a gym a few times a week and every time I came out, I’d feel absolutely awful. I would usually self-harm as a result of the thoughts I had and a few times I made plans to end my life because of the thoughts. I’ve no idea why this happens to me, but it’s something that’s out of my control. And don’t just tell me to take a brisk walk. Like I say, if I don’t feel up to doing something, forcing me to do it will make me feel worse. I do things when I feel ready to do them.
9. Can’t you see that you’re unwell?
I’ve had a few variables of this one, the most annoying being “But you’re intelligent! Surely you can see that you’re not well!” If I could have seen that I wasn’t well, I would have said so. Schizophrenia has a nasty habit of preventing a person from realising that they’re unwell. Around 30 to 50% of people with schizophrenia fail to realise that they are unwell and trying to force them to see it will often upset or anger them. Don’t try and force a person to see that they’re unwell, let them reach their own conclusions in their own time.
10. You can’t be schizophrenic, you look so normal!
Again, this one has a blanket response from me: “What’s normal?” You can’t always tell if a person has a mental illness just by looking at them. These sort of comments always had a negative impact on me as it invoked one of two feelings. One feeling I got was making me feel like I was wasting NHS resources because if I looked OK, then I must have been OK. The other feeling I got was making me believe that I wasn’t unwell. Like I said in the previous point, not everyone with schizophrenia realises they’re unwell. I am one such person. Telling me I look normal when I’m unwell and not realising it is a surefire way of making me believe even more that I’m fine. So less of the, “You look so normal!” It’s not always a compliment!
So that’s ten things not to say to a person with schizophrenia. If you want to help, just let a person know that you’re there for them and that they can talk if they want. But never force a person to talk when they don’t want to. More ways to help people can be found at this blog post here.