Voices and visions don’t have to be extreme to be overwhelming. There are lots of ways they can be too much to bear, whether it’s their continuous presence, the way they manifest themselves, or even other factors in your life making them ‘one thing on top of another’.
So what we would like to offer here are some of the options open when coping becomes difficult. These are all based in England, but if you are visiting us from abroad please take a look at Intervoice, to help you find a Hearing Voices Network nearer to you.
Before we go any further, let’s hear from Adam, whose voices make him feel worthless and isolated. Things got very difficult for him:
“My voices have always been hard on me. Telling me I’m worthless scum, fat, useless. I felt really trapped. I mean, how do you get help with something no-one else can hear?
“Two of the hardest things were finding someone who I thought would listen and getting over the shame I felt because I was ill. That was maybe the hardest, because I didn’t want anyone thinking I was weird, or refusing to have anything to do with me because of my voices. This got made worse because it was exactly what one of my voices kept telling me.
“In the end it was a friend at the shop where I volunteer who picked up on my anxiety and asked if he could help. Just knowing that there are people out the who will at least try to understand without judging made a difference. Since then I found a Hearing Voices group through the HVN, so I’m sharing with people who actually know what it’s like. That helps a lot. I’m still careful who I tell, but I feel better knowing there are people it’s safe to share with.”
A problem shared…
Adam’s experiences are very common amongst voice-hearers, and it’s all too easy to find yourself feeling isolated and stigmatised by them. This is why it can be very helpful to have someone you can share them with. Whether this is a family member or someone from a support organisation, the opportunity to be heard, to share your feelings and thoughts, and even gain a different perspective on how others see you can be a really big help.
People have found help with their friends, partners, spiritual leaders, counsellors, relatives, and social or support workers. Perhaps there’s someone who you could share your story with. Having just one person with whom you could share your story, what you experience and how you cope, could help a lot to ease the burden.
Hearing Voices Groups
It can be difficult to know how people will react when you tell them what you are experiencing, and this is where a Hearing Voices Group can make a real difference. Joining an online or face to face group puts you in touch with people who have experiences similar to yours, in a place which is sharing, supportive, and confidential.
Hearing Voices Groups offer people who hear voices, see visions or have similar sensory experiences the chance to meet and support each other. They can become a safe haven where people feel accepted, valued and understood. Groups run in voluntary settings, some in organisations, community centres, mental health centres, hospitals, prisons, youth organisations, hospitals and online. Every group is different.
What about seeing a Doctor?
Medical help can be very important when you are coping with voices, but many people are uncertain when, or even whether, they should go to their Doctor for help. Take a look at the following list. If any of them describe what’s going on for you, then please make time to speak to your GP.
- Feeling like you cannot carry on and your symptoms are getting too much to bear.
- Harming yourself or those around you, either because of what your voices say, or the stress of having them
- Experiencing confusion or finding it hard to concentrate because of your symptoms
- Feeling scared or frightened
- Finding it hard to work or study
If you go to your GP they may offer a number of options to help you. To access these, they will most likely refer you on to Mental Health Services, where more appropriately qualified professionals will be able to support and help you.
Many Mental Health Services are aware of the Hearing Voices Network, and may be able to help you find a group. Like so many things, it depends where you live, so it’s well worth checking out the Hearing Voices Network’s ‘Find a Group‘ page. Talking Voices is our weekly online group and is for people anywhere, and our in person face-to-face group is on the Isle of Wight once a month.
Typically, Mental Health Services should be able to offer you various kinds of support from medication, counselling and Cognitive Behavioural Therapy.
What is important is that you feel in control of what happens to you. Your Doctors, (whether they are GP or Mental health based) should explain and gain your consent for all medications and procedures. The only exception is if they feel you (or those near you) are at immediate risk of harm. So ask questions and make sure they know what you think and how you feel about the treatment.
What choices do I have?
Traditionally Psychiatrists have worked with a very fixed biomedical model with voice hearers. However, thanks to the work of the Hearing Voices Network (HVN), there are now many (such as the Critical Psychiatry Group) who are open to the HVN approach and will support patients within the HVN framework. Although it varies from area to area, it may still be worth asking your psychiatrist if they are familiar with the HVN, and whether they would support you in exploring it.
Depending on your local NHS trust, in many cases you should have the right to choose which service you are referred to. This can include:
- Being able to choose the organisation that provides your care as an outpatient (I.E. not admitted to a ward for your care).
- Being able to choose when you are referred for a first time for an appointment.
- Being able to choose which organisation provides your care – provided it is clinically appropriate and has been appointed by the NHS to do so.
The main exceptions to this situation are if you are in prison, have been detained under the mental health act, or are in crisis and need emergency help. If, under more normal circumstances, you feel you were denied your right to choose at the time of your initial referral, you could contact the PALS (Patient Advice and Liaison Service) in your area for more information about what to do.
Here are three links you might find useful:
- Your right to choose: https://www.gov.uk/government/publications/the-nhs-choice-framework/the-nhs-choice-framework-what-choices-are-available-to-me-in-the-nhs
- The Critical Psychiatry Website: http://www.criticalpsychiatry.co.uk/
- Finding PALS support: https://www.nhs.uk/service-search/other-services/Patient-advice-and-liaison-services-(PALS)/LocationSearch/363
What about taking medication?
As part of your treatment you will probably be offered medication of some kind. For some people medication can offer very helpful short-term help with more distressing aspects of their experiences, whereas others find it helps them with their everyday lives and take it for longer periods.
The most important thing to remember is that medication is only one part of the help on offer, so receiving it shouldn’t exclude you from getting counselling or access to other types of psychological support.
Medication can be different things to different people. What helps one person with their voices and other symptoms may not do much for another. The same goes for side effects: some people can put up with them, for other people they are completely unbearable.
There isn’t one single drug which works for everybody, and Doctors know this, so it’s okay to talk with the prescribing Doctor to go over the different meds available. Things you can ask them include:
- What is this medicine called?
- What is meant to do?
- Which symptoms is it meant to help me with?
- What are the main side-effects?
- Do they cause sedation or weight-gain? (common with many antipsychotic medications)
- How might they affect me in everyday life? With work? Or driving?
- Are there alternatives if this one doesn’t work well?
Finding out these things means you are more informed and able to make a better choice when deciding to take your medication. It’s all part of ‘Informed Consent’. You may have heard this phrase before and it’s about being able to engage in your treatment and not just be ‘told what to do’. You have a right to this and doctors are happier to work with a patient who feels able to take part in their treatment decisions.
The medications are intended to help and, unless you’ve been detained under the Mental Health Act, it’s up to you whether you try any medication your GP or Psychiatrist offers you. Talk to them, listen to them, they want to help.
Informed Consent includes the right to reduce your medication or not take it at all. If you decide to do this, then it’s a very good idea to make sure you have other support to help you cope with your visions or voices. If you are reducing or stopping your meds, then talk to your Doctor about it. Unless they believe you are at immediate risk of harming yourself or others, they should respect your wishes.
It may help to take information with you to help explain your reasons for your choice, whether it be books, articles or even a diary where you’ve recorded your difficulties with the meds. Some patients like to have someone with them – a friend or advocate – who can support them. Remember – you have a right to fair, informed treatment and above all, respect. Hearing Voices doesn’t make you any less deserving of the help available.
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We meet online each Monday from 5:30pm to 7:00pm. Email talking.voices@yahoo.com to find out how to join.
