Extreme distress means when someone is completely unable to function in everyday settings. GPs and psychologists will be able to measure the degree and type of distress.
This is a story from my book Talking about Tinnitus
(All names and some details have been changed)
Roger had worked as a fitter at Fords for years , and had taken the redundancy and enjoyed his early retirement. He knew he had a hearing loss, everybody did, but it wasn’t a problem, and he didn’t need or want hearing aids. His wife Rosemary, however, had a different opinion. She knew all the times he was missing out on conversations, and how angry and embarrassed he got when he misheard or got the wrong end of the stick. He also often complained about hearing tinnitus, and that sometimes she thought he seemed depressed and quiet, or moody, and he’d sometimes told her that was when his tinnitus had been louder, or worse. Roger had told Rosemary that sometimes he couldn’t hear what people were saying because the noise in his head was so loud it drowned out conversation.
Roger had heard his tinnitus for the last 20 years or so. At first it had worried him, but once he’d talked to other people and found out that most of his mates had it too, it wasn’t a concern; just part and parcel of working on the shopfloor.
Roger and I went through the Tinnitus Handicap Inventory (THI), and at first, he was reluctant to admit it was a problem. The THI is a great tool for beginning the conversation about how tinnitus affects your daily life.
A ~ “is it difficult for you to concentrate with your tinnitus going on in your head?
R ~ “No, I try not to listen to it most of the time. I don’t really have anything I have to concentrate to do. I don’t read books or anything like that, so no, that’s not a problem.”
A ~ “It might be your hearing, or it might be your hearing and your tinnitus combined, but for now I just want to concentrate on how your tinnitus makes you feel, and the impact, if any at all, it has on you and your everyday life.”
R~ “It makes me angry.. I do get moody and grumpy. Sometimes all I can hear is this bloody noise. Rosemary doesn’t understand why I come to bed so late and sit up watching the tv. We have endless rows over me sitting up. She thinks I’m watching football or motor-racing, but really, I just don’t want to go to bed. I don’t want to be somewhere quiet. I don’t want to only hear that noise. It does make me worried, but I’ve had it so long, it can’t be anything serious, it’s just my ears, but still, sometimes, in the middle of the night when it wakes you up, it can be a bit… worrying”
We were now opening up to a deeper understanding of the problem. Roger had supressed his feelings and worries, and by using the THI we are able to directly explore what was really going on.
R~ “I’ve never told anyone this. Not even Rosemary. What good would I be to her, if I can’t even manage odd bloody noises in my head. She’d think I’d gone mad. I can’t tell anyone. You can’t tell anyone. Sometimes I feel that I just can’t cope, that it won’t stop and there’s nothing I can do about it. I never liked feeling this useless. Even after all this time. You’d think I’d just get used to it like they say on the tv. Even the doctor said I’d just get used to it. I know it’s not going to kill me, it’s not a serious illness or anything. But I haven’t got used to it, not really. Never. It drives me crazy that I can’t make it stop. I don’t like not being in control of it, sometimes it seems to take over everything, and that’s all I hear and think, so I bluff my way along. Cheerful Rog, that’s me. Don’t let no-one know how it makes me feel. But it does get me down. I know it does. Rosemary’s’ right I do get moody. Sometimes it’s so loud I just have to go and do something, or hit something. I can spend hours in the shed just hammering nails into an old bit of wood. Or at the gym pushing those weights. There’s a punch bag that’s got my name on in there.
The worst thing is there’s never a minutes’ rest from it. Sometimes I think, ‘oh, its stopped’, but it hasn’t. it never does. Not never. It just wears you down, you know? I used to be more sociable, and I do try. Rosemary’s a very sociable girl, we have lots of friends, so I try and tag along to keep her happy. If I was honest I’d rather not go out sometimes. I can’t hear and then there’s the noise. And I’m always worried I’ll look an idiot. Luckily all my mates are deaf from Fords too, so no-one minds too much, it’s all part of the joke. But I do mind really, if I’m honest. I hate it.”
Sometimes the first time we can be really honest about our tinnitus is in therapy, because we will not be judged or dismissed, but listened to with empathy and understanding.
