Living with Distressing Voices: The Challenge and Some Strategies
By Renea Mohammed
Hearing voices can be a devastating experience. There have been times in my life when I’ve heard nasty, derogatory voices from the moment I woke up until the moment I fell asleep. They were voices that watched me shower and made mocking comments. They were voices that argued I was stupid, lazy, a bad wife and deserved to be dead – among other unpleasant things. They were voices that told me those who cared about me would all be better off if I killed myself. Once these voices got going I heard them continuously. They’d wear me down and I made suicide attempts trying to escape them. I had no insight. I didn’t believe I was ill. I thought they were real.
I believed I was under surveillance too. This wasn’t nice either – but it was not nearly as bad as the voices.
People tried to get me on medication, but I did not believe it would help. Why would it help with something that is real? A psychiatrist told me about brain chemistry. I left the appointment under the impression that the medication would change my brain chemistry. If my brain chemistry was normal, I reasoned, then changing it would be bad for me. I was dead set against taking medication.
I think it speaks to the power of family and importance of family involvement that a family member – my husband – was able to convince me to try meds despite my very strong reservations. I tried it willingly only because it meant so much to my husband . I don’t think there is any worker who could have got me to do so voluntarily. Unfortunately the drug had side effects. I didn’t like them. I didn’t think it was going to help with anything. So I didn’t stay on it long.
Eventually I had my first hospitalization. There I was forced to take meds because I was seen as a danger to myself. I was on one for sleep and one for voices. The drug for voices had side effects that were actually worse than the voices. Again, I thought about suicide. But I knew the forced treatment was temporary and I’d be able to get off that drug. The knowledge that the forced treatment was temporary is what I hung onto during that first hospitalization.
I did complain about the side effects. But one side effect of the drug was that it made my thinking slow and foggy. I wasn’t as articulate as I normally am. I also didn’t know the words to describe what I was experiencing. People meant well, but they did not understand how awful I felt and so they kept me on the drug.
I’m lucky though. About four years after my diagnosis I found a medication that worked well for me and had minimal side effects. The only side effect was that it made me tired. I still take it now. My body has become used to it so that it has no noticeable side effect at all anymore. On it, I don’t hear voices and I don’t think I’m under surveillance. I found this drug while being treated involuntarily – so for those who advocate for more forced treatment, here is a story for you. For me, the issue of forced treatment is not a simple, clear cut one. As I’ve noted, I’ve also had a horrible experience with being treated involuntarily. I’ll add that I came close to having a second horrible experience – but that is not what I wish to dwell on here.
There are down sides to the drug I take. I am at risk of developing diabetes and liver problems. I sometimes worry about developing metabolic syndrome and the shortened lifespan that can lead to.
I’ve tried going off my meds. I’ve learned from experience that doesn’t go well for me. The voices always come back.
What all this has left me with is a strong interest in how people manage to cope and live with voices. It’s not because I’m against medication. I take medication and it’s played a key role in my recovery process. But one reason it took me so long to learn that the meds worked was because some meds didn’t work for me at all and some meds took a long time to work. It is possible to be on meds and still be hearing voices. There are also some unfortunate folks for whom current meds just don’t seem to work. They’re treatment resistant. So exploring ways to manage or even live well with voices is very worthwhile.
I did have strategies that helped me to cope with my voices, although I didn’t think of them as “coping strategies”: they were just things I did. I’m going to share them now, not because I think these strategies are the best way to cope with hearing voices or that they’ll work for every person, but rather because they might be helpful to some folks who hear voices that are distressing.
If I come across others who are willing to share their strategies on this blog I will post them as future entries.
Strategies I Used:
Sometimes talking to people about things that were completely unrelated to my voices was helpful. It helped me to not focus on what the voices were saying.
Sometimes reading helped as a form of distraction. I had a hard time with reading, because the voices would be talking while I was trying to read. It was a bit like trying to read a book in front of the TV with the TV on and the show being about you: makes it hard to focus on the book. But I tried to read a lot and sometimes I would succeed in losing myself in a book. Then I’d still be hearing the voices but they became a kind of “white” background noise that I wasn’t following.
I used a rhyming technique that was also a form of distraction. I’d start with a verse. The first verse was always:
Voices, voices in the air
Voices ,voices everywhere
If I ever found out who
I’d shove your face in doggy doo.
I’d then change the words to the verse while keeping the same simple rhyming scheme. I’d see how many new verses I could come up with in a row without pausing between them. This meant that as I was saying the current verse (in my head) I was also trying to come up with the next verse. When I ran out of new verses I’d just start over again. It required enough concentration that although I’d still be hearing the voices, I really wasn’t following what they were saying.
B. Music & Sound
Sometimes I’d crank my Walkman up full blast (in the days before iPods). Listening to the loud music would block out the voices. I know it’s not good for your hearing and for that reason wouldn’t recommend it, but it was something that helped me. I’ve met others though, who say they’d just hear voices in the music so it wouldn’t work for them. We are all different.
Music was also helpful in that it influenced my mood. Certain kinds of music would help me relax or lift my mood and this helped me to cope. Music was also sometimes a form of distraction.
Other sounds were helpful too. I’d turn on the TV and various radios in my apartment all at the same time so that there were non-distressing voices competing with the distressing ones in my environment.
Other times I’d whistle. Again this was to create a sound to compete with the voices I was hearing.
This is one of the things that helped me the most. I have a very supportive husband (and family in general). My husband was willing to listen to me when I needed to share what I was experiencing – even when I was going on at great length about what the voices were saying or the delusional ideas I had. Because he was willing to listen and I had someone to share with, I never felt like I was alone in my struggles. I always felt like I had an ally. Having someone willing to listen, who didn’t need to change the topic, was tremendously powerful. I never felt alone.
Sometimes, when the voices were upsetting me, I’d visualize myself in a cave. The walls of the cave were protective, but the voices were coming in through the opening. I visualized them as black tentacles lashing at me but they were limited to accessing me through the opening of the cave. They also had to make it through the shield I imagined having at the entrance of the cave, which was my anger with them. Another defense I visualised was a music box which represented the music, whistling and other sounds I used to cope. The music box was inside the cave with me. And there was also a fire which kept burning. The fire represented my “goodness” – things like my love for my husband and family. It kept burning no matter how much the tentacles attacked. The piece of art that appears with this article is a representation of the visualization I did.
E. Changing my Thinking
I once made a very simple change to the way I thought about my voices that made them much easier to bear. When I first started hearing voices, I imagined them as coming from people who were better than me: smarter than me, better looking than me, more successful than me etc. Then one day I got to thinking: these voices are pretty darn mean. They’re wrecking my life and they aren’t just wrecking my life, they’re wrecking things for all the people who care about me. The voices aren’t coming from people who are superior, they’re coming from low-life scum. I’d never do what they were doing to me to someone else. I was superior to them. This made all their derogatory remarks sink in less.
I hadn’t gained insight yet. I still thought it was all real. But I had still found a way to change the way I thought about my symptoms in a way that made them easier to bear. I tend to think being offered cognitive behavioural therapy for psychosis would have been helpful.
Was this enough?
No. It was like putting a tiny bandage on a great big wound. My voices were too negative, too constant, and too persistent for all this to be enough. But it did help and so I am sharing.
Postscript: I thought I should add a bit more about my recovery to this article. To me, recovery is about “living beyond your illness:” living a life that is satisfying, fulfilling and meaningful. I think I am far along the journey of recovery. I have a good marriage to a wonderful man, I have a good job, I have friends, I have freedom to pursue my interests and I live in a nice place. I think I am “living beyond my illness” and far along the path of recovery. I am happy. Isn’t being happy with one’s life what recovery is all about? To see an article more focussed on my experience of recovery click this link to The Schizophrenia Society of Canada Newsletter with recovery article on page 5-6. It is interesting that one response to the linked article was for someone to say I was never really sick because I do so well now.