help, please
how do people deal with family that refuse to ... - Tinnitus UK
how do people deal with family that refuse to understand or educate themselves on the pressures of dealing with extreme T and hyperacusis
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Chilledartist
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At first it annoyed me - everyone I spoke to has/ had T. "Why was mine different, why am I making such a fuss?" - they asked.
I told them - mine is the sound of a river in full gushing torrential flood, crickets chirping, buzzes and digital-sounding bleeps, it's pulsatile (I can hear and feel my heartbeat/ pulse in both ears) I also have vertigo/ dizzyness/ brain fog. I don't sleep well which further deteriorates my mental capacity. I can't work anymore (Engineer). I don't think straight half the time. "Oh, by the way" I tell them "at least I don't have any ringing in my ears."
"Oh," they said and then changed the subject. Basically, I think nearest and dearest whilst generally being sympathetic soon tire of us - it's natural - they want to minimise our suffereing. If they do any reading up on it they'll think we just need to find other stuff to do other than dwelling on it. Broadly speaking they're right. They don't want to 'go there' in terms of thinking about how much we're actually suffering with this stuff. If your child falls down and grazes their knee you pick them up, dust them down and move on quickly. This is what our friends and family are trying to do for us - ocassionally rather clumsily. They can't help not wanting to witness us falling to pieces in front of them.
Try and understand that most of them are coming at this from a kind and caring point of view but they think they're doing the best for us by not putting up with it - not indulging it. They think we're going to beat it and move on.
Which, of course is what we must and shall do, to be frank, with or without their help - right?
There's a great old saying in self-help groups which is appropriate to state here: when people give you advice or tell you what you should be doing (friends and family included); "Take what you need and leave the rest."
Good Luck,
thanks Jimbob7, I have 4 different noises..constant whooshing, popping-hate it, radio wave sounds and crackling, all with fluctuations in loudness, sometimes i don't sleep for weeks, leaving you frustrated and angry, then you get dismissed by people who don't understand. and round and round we go. then i get attitude for not being part of their noisy lives, so, isolation again....so sick of this crap
Healthy sleep of a decent duration is one of the most important things to help you cope with life with T. Go see your doctor and tell them you're not sleeping because of the T. They'll fix you up with something. If you sleep well your whole attitude towards the T will become more objective and you'll deal with the whole damn shooting match much better.
with all due respect, my doc can go n .... himself, mirtazapine is the reason i have all this crap, so they can stick their synthetic drugs up their....sorry, but not taking that back
I don't know what to say man, I feel for you; I've heard about insomnia caused by Mirtazepiene and when my doctor perscribed that I didn't take it. I knew the risk of insomnia was one I wasn't prepared to take so he slapped me on Sertraline which did nothing good. This was the same doctor who mis-diagnosed me as Meniere's, then Vesibular Neuritis so my trust was running low at that point anyway.
I ended up on Phenergan which has been helping me sleep and which I take on a "as needed" basis. It's not ideal. There's a dis-interest in us amongst GPs. They know what we have is non-critical/ fatal and so we get relegated off to the "manage symptoms" dept. If only they could hear what we hear they'd change their tune.
T can affect anyone, including doctors. So I think we need those doctors to bang the drum for us and get T to be taken more seriously within the profession.
Perceptions might improve for us then.
I fully agree with you .
agree, too... but i think they know that some of their medications can and do cause T, so wont stand up about it
I see what you mean, but I’d be interested to hear the source of ‘some medications causing T’. Surely it would be unethical for doctors to prescribe medications with such life-oppressing side effects? As it stands, I’m not convinced by that statement.
Mirtazipene caused mine... listed on the side affects, then refused to accept that
You have a statutory right to a 2nd opinion. Perhaps that might break the deadlock?
in reply to Lee_Scoresby
Hi unfortunately even after i explained to a Dr about certain meds can cause T he continued to prescribe one for me which i refused, of course not everyone will have T but we are perhaps far more cautious, there are unfortunately 100s of meds that are ototoxic so it is very difficult for us.
Do u think Mirtazapine caused ur tinnitus? I am on it to help me cope with tinnitus but went higher dosage past week and it’s got so much higher !
Suffer with anxiety as well so it doesn’t help with T !!
I think I approached it in a few different ways (1) I found some T sounds similar to mine on Youtube and online sound generator and asked them to listen to them with me and then asked them, how they would feel if they had these noise 24/7 in their head, this helped create some empathy for the distress I was going through (2) I realised that some folks close to me did not have the ability/capacity to support me, so I firstly lowered my expecatation of what they could give me, in the spirit of being kind to myself (no point hoping they could support me when they didn't have ability as this only kept me in a heightened state) and I only engaged for support with those who COULD understand and support me (3) I have seen folks bring along their family to a tinnitus support group so they can hear from others living with the condition (2nd person perspective) to help them understand the distress it causes and potential strategies to help support. Hope this helps in some small way, stay safe
I asked them to do this.... listen to the noises I here, they refused and called me stupid for wanting to do this, sweep it under the carpet, pretend its not there and everything will be ok,,,only drives my frustration even higher... cant do this crap on my own anymore
It sounds like they are not going to be able to help you. If you need support I strongly suggest not only talking to Tinnitus UK helpline but also attending their face to face or online support groups to obtain empathatic support
TinnitusUKPatPartner
Although it will seem harsh, I would have to agree with what Surrey CCC Fan is advising - it isn't always possible to have family members or friends understand a subjective, sensory condition like tinnitus, no matter how much we try.
The onus is ultimately not on you to do that - you can open a door but you can't make people walk through it. The key thing, which I think is possibly the most difficult, is to not get angry or frustrated by people who are not able to understand your difficulties - this is going to add to the issues you might be having at the moment and the targets of your frustration may never be aware of the effect that their indifference is having for you.
I've had experiences of family members telling me that a diagnosed condition is 'in my mind' and fabricated and refusing to acknowledge that it is real - getting upset by this ultimately does not impact the people who are burying their heads in the sand. It would impact me adversely and I choose not to focus on what I can't change but to give more energy to what I can have an impact on.
i know, Pat...but this just leaves me completely alone....completely!!!
Hi, don’t get angry or frustrated. Just concentrate on you and how you are going to manage this in the long run. Don’t wait for the NHS go private if you can and you must think positive and don’t search for a cure, get the support you need to change your mindset and go and get your life back x
TinnitusUKPatPartner
The community here is a form of support, Chilledartist - so always bear that in mind.
What I don't want to happen for you is for you to feel that you have to fight a battle to try and get people who are not on side to understand your difficulties. Some people don't get it - and perhaps never will. The person expending the most energy in a situation like that is the person who can least afford it - the person affected by a health issue or condition.
We all want to be understood and have support from people who are close to us but that can sometimes be a barrier which is difficult to leap over. They may offer support or caring in other ways but tinnitus or sound sensitivity might be an issue which for one reason or another they can't understand.
We want people to try and meet us half way so that we can be part of their lives and with sound sensitivity or auditory processing problems, it's going to be difficult for anyone to fully appreciate or put in place accomodations to support the person in their lives who is going through the difficulties.
I suppose what I'm ultimately saying is that you can do all the legwork and make the compromises and still not get understanding from the people you're seeking it from. That's galling and upsetting but none of it is your fault. You can do so much - if people don't want to engage with you they don't have to and you don't have to expend energy on trying to connect with people who don't appear to have an interest.
There are always people, as SurreyCCC fan mentioned, in support groups or the folks on the Helpline and webchat who can offer support or advice - so you're not alone in that sense.
When I first got tinnitus, I was 17, it was 1969, all the doctors and my family assumed I was using illegal drugs (I wasn't). Since nobody but you can actually hear the sounds, this really gripped my gut (daily diarrhea) and I quit smiling or talking much or sleeping (persistent depression) and felt more isolated than ever.
That's what's good about this forum, we all have these disturbing ear noises, so we really believe and understand each other. So, Chilledartist, I believe you, I'm sad for you, I truly hope your family begins to get how hard this is for you, and your life gets better.
I think it’s lovely that Pat has taken the time to write that long post. I want to echo that and say that people on here do totally empathise n the forum can be a source of comfort.
Really sorry to hear this, it must make it very challenging for you...if your family are not supportive or understanding of this extremely hard condition is there anyone else you can talk to, sometimes a good friend or colleague may understand and be willing to listen, I have found it very helpful to explain what T is so that people can understand and that you really need a lot of support. It is a debilitating condition as has already been said, if people have to leave work as they cant function then that tells you its pretty serious.
I would also recommend searching out and contacting Julian Cowan Hill on You Tube, he has an app 'Quieten' free months trial, regular zoom sessions with him and others going through this who raise these sorts of questions about family, the zoom sessions are very helpful for me. JCH had T 20 years its now gone as he found somethings that helped him. He also has a website where you can email him for support.
I find that most people tend to be dismissive of T as they just dont understand, its not just the sounds but the pressure, pain and overall feelings we get with this, we cannot escape it but we can do things to lessen its impact greatly.
