MH – Auditory hallucinations *guest blogger*

You’ve all seen them on tv, usually in a drama show or movie, the people who hear voices. They are usually portrayed walking down the stret, maybe pushing a shopping cart full of their worldly possessions and frightening a pretty lady as she has to pass. No wonder there is a stigma surrounding auditory hallucinations. I admit, I never knew much about “hearing voices” and thought the people who did must have schizophrenia or something. The following guest post explains what it’s like. It was sent to me anonymously, and I certainly don’t imagine this person walking down the road with a shopping cart.

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About 3% of the world’s population hears some form of auditory hallucination. I am one of those people. About 30% of those people never seek treatment and may have voices or other sounds that are positive, pleasant or non-distressing. I am not one of those. For those like me, the voices, noises or sounds are distressing and intruding, making daily life difficult to carry out.

Currently unless someone had told you previously this about me there is very little chance you would know unless you were either in a car with me and picked up on the fact that I glance in the mirrors more than normal trying to be sure that the police or ambulance sirens I hear are just a figment of my mind or you saw me washing dishes at my kitchen sink and wondered why I kept looking over into my living room where I keep the telephone staring at it watching for the flashing light that tells me when it is really going off. Even when I am off of medication there is still a very big chance that you would never know what I hear since my form of hallucinations are mostly internal and I am very good at appearing on the outside as if nothing is wrong internally. For me it is not as if someone outside were talking to me, instead it is various voices that I hear inside my head or music playing or a cacophony of sound.

My voices began when I was about 11 years old and tormented me untreated for the next 8 years. I was a kid that generally kept to myself and I already had a previous phobia of anyone in the medical profession. Top that off with my parents one time when I was about 10 in a misguided attempt to keep their children on the straight and narrow, one morning after church sat my siblings and I down at the dining room table and told us that those with mental health problems had them because they hated their families and were awful people and you have a recipe for a kid that stops talking to anyone about what is really going on with them. I didn’t hate anyone, least of all my family and I just assumed I must be an awful person so I never told anyone as I was sure I was going to get into big trouble if someone found out. It wasn’t until I got into therapy after college that I started to get the help I needed and eventually was medicated and started to breathe a lot easier every day.

Until the right medication was found for me, that took over 2 years of trial and error to find and I consider myself very, very lucky that one works without horrible side effects or making me feel drugged and out of it constantly, I felt that I was constantly in a state of running. That if I just could get far enough away, fast enough I could leave the voices behind. Something would stress me out and make the voices worse for a time and I would have to start moving. I would walk and walk for hours and hours trying to wear myself out so they would stop. It never worked. I would drive in my car up to my second cousin’s home for a weekend or a few days and just hike in the mountains by her house. Again trying to exhaust myself, push myself so I could turn it off and make it stop. It never worked. I was panicked, terrified that I was going insane. I couldn’t understand why this was happening, I was constantly trying to pick through my life trying to find out what I did to cause this to happen to me. It took years in therapy before I could even come close to grasping that things like this need no reason, it isn’t my fault, there was no one event that I did, no wrong step I took that caused this, that it just is a part of my life.

Even on medication I will have break through periods. Periods where the voices get bad. The sirens and the telephone never really go away even with medication. There are also times when I’ll be doing really well and come off medication with my doctor’s approval. Mostly this is because I have a body that has time and time again decided after a few years that it doesn’t like the meds I am on and they will stop working or I will get sick with side effects. So because there is only 1 antipsychotic that is currently on the market that has even been even remotely effective for me, my doctor and I both agree that it is best to give me periods off the med in an attempt to keep it effective for as long as possible. I can generally go about 10 months without it before the symptoms return to an intolerable level.

When I am having a period where the voices are active, my functioning level decreases dramatically. When I was younger I use to be able to “fake it” quite well for long periods of time. Unfortunately doing this day after day, year after year, had some very negative effects. I would get to the point where I would “give in” to what the voices wanted and that was never a good thing and was very dangerous to me. I was never harmful to others, just myself. Now when things aren’t going well I will have to cut back on my outside activities dramatically and even then some days getting basic life needs taken cared for is impossible. I need a lot of help from my family and friends who are willing. There are times when hospitalization is necessary and generally I end up with more doctor and therapy appointments when my voices are acting up.

This illness also impacts my life in that if I get over stressed generally the voices will break through. So I am unable currently to work a full time job, or really even a proper part time job. I am dependent on government assistance financially as well as help from my family to survive in today’s world. I try to be as independent as I can and do as much as I am able, but some days that is very little compared to what most people my age are expected to accomplish. Unless things change dramatically in the coming years, there is little chance I will ever be able to work full time or be in high stress demanding environments for prolonged periods of time.

There are very few people who know that I live with this and even fewer who if they did know would be able to understand and accept it. There is a negative stigma clouding nearly every outside person’s view of what it is like to live with auditory hallucinations. It frightens people. And it makes them defensive. They shut you out and see you as less of a person. They stop looking at you like an equal and more as some kind of freakish anomaly who will one day snap and go on some form of rampage. When really the likelihood of that ever happening, at least with me, is zero. It leaves the person living with this ostracized and alone, when many times really what they need is just someone who cares and recognized that they too are scared out of their minds at what is going on beyond their control. People don’t understand how much I wish I could control this, how much I wish I could make it stop and go away, how much I hate to be med dependent and acknowledge that I will be med dependent for the remainder of my life. How scared I am at the thought of “What will I do when this med quits and there are no new ones that work for me?” as I know someday that is probably going to be a fact I am going to have to face and deal with. People don’t understand how much their comments hurt about how they wish I could just do a certain thing for myself that day or how they wish they too “Had all the free time you do” because I don’t work a regular job. People don’t understand how much I want to crawl under a rock and never come out when they tell me how tired they are of “Cutting you slack all of the time.” Certain things are beyond one’s control. I am a person who hears voices. I can’t change that. I live with it, I work around it, I manage it, I do the best I can. Same as anyone else. You can’t expect me to be someone I’m not or do any different.

I wanted to write this post for Mental Health Awareness month on this blog because I think it’s important to tell people what it’s like for at least one person who hears auditory hallucinations. There are many of us out there, most of us speaking up only behind the closed door of our therapist’s office. That is not helping the stigma. The barriers need to come down. And this is one way I can start to do that. What are you going to do?

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Thank you for sending this to me. You have really shed some light on what it is to have auditory hallucinations, and at least this one tiny corner of the net will see your story. Maybe they’ll tell others. Maybe if they hear someone making fun of another who hears voices, they’ll speak up and say, no, don’t talk about them like that, I read this post once…

5 Comments

Filed under awareness month, guest blogger, mental health

5 Responses to MH – Auditory hallucinations *guest blogger*

  1. Man I can’t imagine dealing with hearing the phone where there’s no phone. Woe man I had a weird thought. What if a blink started hearing traffic in places where it wasn’t? Like parallel where it was perpendicular and vice versa? Or you’d think cars were jumping the curb when they’re still in the street? Your senses aren’t supposed to lie like that.

    I don’t hear voices, but I hear sounds that I shouldn’t sometimes. They’re disturbing bits of old nightmares, or bits of songs I found scary as a kid, or other things my mind would think I’d find positively nasty. They hit me when I’m waking up, or in the shower, or relieving the dog, or other random times. The only thing I have found that works if they hit me in public is to hum a song I find soothing. It has to be a certain song, not any song will do. I can’t imagine dealing with something worse than that. I hope your med stays working for you for as long as possible.

  2. Hey, anonymous, what are your thoughts on “A Beautiful Mind”? Do you love that movie or hate it? Have you seen it?

  3. Anonymous

    I just wrote a comment to answer you Carin but blogger ate it. I now have to remember it all. I will condense.

    The telephone thing really doesn’t bother me all that much. Mainly because it happens mostly when water is running at the same time. So I basically have trouble if I’m like washing dishes and who gives a shit about washing dishes. My phone also has a red flashing light that goes off when it is ringing so that is a good reality check. I think if I couldn’t see I would probably just hit my voice mail button after every time I ran the sink. You find ways to work around it, same as any other disability. I really have more of a problem with the sirens since I’m also pretty terrified of the police. I’ve never been in trouble with the law before, just the idea of being arrested scares the crap out of me and since there are times when I don’t act “steryotypical” for whatever reason and I know people who have been arrested just for acting a little odd I get worried. Also I had a seizure once and the emergency people totally freaked me out and I ended up in handcuffs, I think they thought I was on drugs (I’m not nor ever have been) and that made me headshy of police and EMTs and stuff.

    I think I saw that movie once a really long time ago. The stuff I remember was ok. It’s pretty fuzzy memory though. I remember the shock treatments he went through were portrayed pretty acturate for the times when he went through them. I mean I had ECT and they knock you out for it with general anesthetic but the after effects can be pretty nasty. I got off really easy by just loosing the ability to read anything more complex than a simple magazine article or e-mail for 5 years. I know other people who are pretty much living vegetables after. I think in the movie he had insulin treatments where they shock your system with high doses of insulin. Now they have more choices in antipsychotic medication treatments and I don’t think insulin shock is still used much if at all, but ECT is still used more than you would think.

    I’m actually not schizophrenic. my therapist and psychiatrist say my form of auditory hallucinations the way it presents in addition to my other issues doesn’t really fit into any of the DSM dx criteria, so it’s just kind of “there” in my dx below some other stuff. The 2 dx that have been tossed around are “major depression with psychotic features” and “schizoaffective disorder” since I get depressed too, but neither of those really fit me well either I am told.

  4. Ro

    I can almost see how you might hear a phone ringing while the water is running. I can’t think of a specific example, but I can remember times when only during a specific sound, did I think I heard something else. But I can see how the water on like a stainless steal sink might have a tone to it almost, so if your brain is predisposed to making you think you heard something, you could interpret it that way. Wow.

    But yeah, who gives a shit about dishes. 😉

  5. Anonymous

    Oh and Carin, while you never really get use to it, you just learn to cope with your senses lying to you. My eye sight lies as well as my hearing but in different ways as I have a neurological condition that affects them. I technically can see perfectly fine, my brain just doesn’t like to believe that fact. I have been in situations for example I was in a restuarant once with my family and got a dish of ice cream for dessert. It was placed in front of me and I am sitting there staring at it going “what is that grey thing in the middle of it? Why on earth is there something grey in my dish of vanilla ice cream?” I reached out and touched the grey thing and immiately went “Oh that’s a SPOON!” Before I put my fingers on it though I could not for the life of my figure out it was a spoon. Stuff like that happens all the time. That’s been happening my entire life. The auditory hallucinations have been happening more than half my life. You just learn to cope with it. You have to if you want to survive.

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