topic The loneliness of hidden disabilities in Staying well

The loneliness of hidden disabilities

white knight — Sat, 14 Jan 2017 13:44:29 GMT

We refer regularly to our internal battles of the recognition from others that our mental illnesses are indeed serious, just as much if not more do than physical restrictions.

Ok, I have bipolar2, dysthymia and depression. They all amount to serious social problems. But I can say that two other invisible problems cause me more social issues than those. Memory and hearing loss.

Long term memory is OK in me. Short term almost doesn't exist. Most people would have little idea the magnitude of memory loss. Those close to you, like all humans, automatically presume you remember what they told you an hour earlier. Eventually your cry for understanding becomes a scream..."I don't remember".!. Just like "I'm depressed"!.

Another one is partial deafness. Not suggesting full deafness is preferred at all but if fully deaf- sign language is essential. Partial deafness there are hearing aids. With my particular hearing problem, hearing aids do not assist me. The best example to highlight it is secondary noise. Someone is talking to me and the TV might be 7 metres away I can't hear the person speak or Visa versa which is more difficult to tolerate for my wife.

With both issues people can't adapt fully to the new requirements needed for normal family interaction. Can we blame them?. No we can't. They can't see our deficiency to remind them as a person with physical loss would eg wheelchair, arm in plaster...

This leaves us carrying more burden than our mental disabilities themselves, leading to a feeling of loneliness. It could also be the reason some of us talk excessively about our challenges. It seems our problems are more excessive than they ought to be. This could be why...

It wasn't that long ago we might have been institutionalised or kept in a cupboard. Things have improved but I'm at a loss how our invisible restrictions could be visible to family and friends.

A sign on my chest "hearing impaired, short term memory loss" or signs on others..."right eye blindness, dyslexic, OCD, PTSD, anxiety, would not be appropriate.

Do you have ideas on this?

Tony WK

The loneliness of hidden disabilities

Kazzl — Sat, 14 Jan 2017 19:31:33 GMT

Hi Tony - I have short-term memory problems too. I think it's, partly at least, due to medication. I also lose words sometimes when I'm speaking.

I've noticed too that if my mind is racing, if I'm a bit hypo, I won't remember a conversation even minutes afterwards. I remember having the conversation but what was said didn't go into my head because my mind was already racing ahead to something else.

There is quite a bit in the literature about bipolar on cognitive deficit, and I think it's a real thing.

I've got a bit slack about it since I've not been working, but one of the strategies I used was to carry a small notebook with me at all times and write things down, not full conversations but key points like decisions, dates, plans we made etc. The act of writing also helps keep me more focussed I find. Yellow sticky notes on the kettle are also helpful if I need to remember something in the mornings.

As for the hearing, I too have a problem that I think is unconnected to anything else because I've always had it. I don't have good directional hearing - so I often can't tell where noise is coming from, and I have trouble hearing someone near me if there's loud peripheral noise. So in a restaurant, I can hear what's being said at the next table but not always at my table. Weird eh?

I reckon at our age mate we should feel comfortable saying 'I can't hear you very well' and 'I need to write that down so I don't forget'. That's what I do anyways.

Cheers my friend

Kaz

The loneliness of hidden disabilities

1113 — Sat, 14 Jan 2017 20:37:22 GMT

Peaceful nice to meet you, Tony

This is a puzzle. I like puzzles. This one will roll around my head for a while, so as to give you a justifiable answer.

My initial thought would be understanding, expression and trust.

But to get that message across the world is another story.

I hear you.

I will think about this, sound.

Pleasure talking with you

Peace

Matt.

The loneliness of hidden disabilities

SubduedBlues — Sat, 14 Jan 2017 21:42:39 GMT

Hi Tony

"With my particular hearing problem, hearing aids do not assist me." I hear you buddy... err... actually I don't 🙂

My hearing has percussion damage due to cannon fire when I was in a field artillery battalion. For me, there are certain frequencies that I just don't hear. I tell people that when they speak to me, if I seem unresponsive, before repeating your question or statement, to change the pitch of your voice.

Hearing aids simply increase the volume, but making a frequency I cannot hear louder is useless. Likewise raising your voice in a pitch I cannot hear is pointless.

ps: there are three things that happen as we get older... first we lose our memory

The loneliness of hidden disabilities

blondguy — Sat, 14 Jan 2017 22:10:39 GMT

Hi Tony

I 'hear' you re the hearing issues and now some memory issues as well.

I know that hearing loss begins with losing the ability of hearing the 'High Frequency' sounds...when people pronounce an 's' or a 't' it can be a more difficult to hear. Treble on a Hi-Fi system or the high notes on Dolby Digital DTS movie soundtracks as well

It like a high quality stereo system....The music sounds great but I know that if I had blown tweeters I probably wouldnt know

People walking up from behind me too is another sign when they say my name....

I miss the younger years for sure

Another great post TonyWK

Paul

The loneliness of hidden disabilities

white knight — Sun, 15 Jan 2017 06:51:07 GMT

Thanks for your replies everyone.

Kaz, us both being bipolar 2 we have many things in common.

I tried a notebook but wouldn't/couldn't remember to take it nor use it. I have bib and brace overalls for shed tinkering and it stayed in my front chest pocket unused lol. Mmmm, senility ...hello. lol

Yes I have got by with "what was that, I didn't hear you" routine. I suppose I feel sorry for those with partial blindness and other issues not obvious to others.

People talking when their face is pointing away for sure is a problem Paul, or coming from behind..

SB. Yes, I worked security at Puckapunyal. I know how loud artillery/tanks can be.

Tony WK

The loneliness of hidden disabilities

Kazzl — Sun, 15 Jan 2017 08:06:46 GMT

Hiya Tony - hey, we're not senile! We're just a bit ... what's that word ... oh look! A butterfly. What were we talking about? Oh yes, notebooks. Yes, I've got one somewhere ... must make a note to find it. 😄 😄

The loneliness of hidden disabilities

Elizabeth CP — Sun, 15 Jan 2017 10:03:19 GMT

I think an important thing is acceptance. When I had clients who admitted their memory wasn't as good as it was I didn't have a problem with them. We could discuss strategies & they had often found ways to help including using a calender or a notebook to jog their memory. The ones who insisted they had no memory problems were impossible to work with because they wouldn't do anything to help themselves. They often had more advanced dementia.

By acceptance I mean being prepared to admit/accept the disability rather than being embarrassed about it. When we have told someone we can't..... or need...... to do .... if they don't listen to us & ignore our reasonable requests to manage with our disability then they have the problem not us. Of course this is much harder for young people or those who have just acquired the disability as they are learning to manage it themselves & learning to come to terms with it.

People with low vision sometimes wear badges to show they are vision impaired. It would be a better society if people could wear labels to identify their disability without the fear of others belittling them or thinking less of them. Unfortunately society has a long way to go before disabilities such as cognitive impairment or mental illness lose their stigma.

The loneliness of hidden disabilities

1113 — Sun, 15 Jan 2017 18:01:07 GMT

Peaceful morning all,

"It wasn't that long ago we might have been institutionalised or kept in a cupboard. Things have improved but I'm at a loss how our invisible restrictions could be visible to family and friends.A sign on my chest "hearing impaired, short term memory loss" or signs on others..."right eye blindness, dyslexic, OCD, PTSD, anxiety, would not be appropriate.Do you have ideas on this?"

white knight,

I thought about the sound needed to answer that section of your post. Peace.

Social media and marketing (youtube, snapchat, facebook, the music industry etc etc) would be better to the society as a whole by moving away from selfies (vanity), greed etc etc and used to inform the youth of important issues that could prevent further behavior that create stigma.

IMHO

"The world (society) is on a rapid cycle spiralling down and will eventually be filled with sheep of its creation" - 1113.

My journey has just begun.

Enjoy your day all.

Peace

Matt

The loneliness of hidden disabilities

Guest_128 — Sun, 07 May 2017 03:27:14 GMT

Wow thanks Tony,

I think after all these years 45 of them, bipolar add,etc. husband ,3 kids, had own business,renovated house many many stories to be told and hidden.🙀

Recently I forced myself to do a 2 day first aid course,something totally not I would usually do. I needed it to get work.

For the first 90% of the course was hands on and I had heaps of fun,asked questions,joked around and was seriously interested.

I knew there was a multiple choice exam and thought all was going to be fine.There was 18 people from 15yrs to 68yrs,so thought I would blitz it.

I was the last to leave,as I read and read the questions,most I had never heard of,some I questioned,some I was sure I had the right answer.

I got 8 wrong,,my teacher looked at me like I dog poo on her shoe. She passed me of course,she couldn't fail.

so I should of been sooooo proud of passing!!!

But no I was so ashamed,embarrassed like a tiny ant trying to fit into such a huge would. SO LONLEY😔

I have typed in many times memory loss and could never find anything referring to me.

That night I typed in LEARNING DISABILITY and the floodgates opened.

They were talking about me.

Now the long road to see where all this fits into my mental health.

Thankyou Tony

I now don't feel lonely.

The loneliness of hidden disabilities

white knight — Sun, 07 May 2017 14:36:03 GMT

Hi 9 names,

Thankyou so much. Your post made my day.

Tony WK

The loneliness of hidden disabilities

Lytaz — Sun, 07 May 2017 16:04:47 GMT

Your comments really resonated with me white knight, especially about why we focus on our invisible illnesses in conversations with others.

When I was younger I am ashamed to admit being impatient with people with multiple, invisible illnesses and quite dismissive when they'd explain their issues, as though they were weak or just embellishing the severity of things for attention.

Now the shoe is on the other foot and I feel the weight of irony when I am likewise dismissed or go unheard by friends, co-workers and employers and even family... 😕

Being misunderstood or put in a social box we don't belong in can be really harmful to our ego, our personal identity, which is why I think we do try and explain ourselves despite the constant negative results.

Alongside my severe refractory depression and GAD/phobias I have a non-fatal but physically and mentally debilitating illness, caused by my antidepressant, which I control with more drugs with their own, invisible side effects.

Like you, I have problems with short term memory and no matter what I say to people they never appear to understand.

"Write it Down" has gone from advice to a hated phrase. I forget to check lists even when they're in my vision, or I forget what I meant and my anxiety over forgetting makes a self-perpetuating cycle

My list of side effects includes immune-suppression (I can't be vaccinated, get sick very easily and chicken pox equals hospitalisation), syncope (aka fainting), dizzy spells, digestive issues, loss of higher cognitive function, a lowered pain threshold, poor temperature control, peripheral muscle weakness, episodes of partial deafness and sight loss, dysphoria, and other problems associated with very low blood pressure.

My depression and anxiety will always have the greatest impact but I've had more problems with employers and friends from the other invisible illnesses.

Do you ever find people's eyes glaze over when you're talking through these issues?

I wear an emergency assist bracelet, it's as close as it comes to physically writing on myself that I suffer from something unseen, even if people wrongly assume it's allergies. 😋

The loneliness of hidden disabilities

white knight — Mon, 08 May 2017 07:33:20 GMT

Hi lytaz,

Gee, here I was a while ago writing my first post of this thread based mainly around the invisible disability of poor short term memory...and you've listed so many more.

Thankyou for enhancing this thread to make us, the readers aware if so many more.

We cant provide clues to our invisible illnesses. We dont like broadcasting them either. We dont have a seeing eye dog (apologies to those with such visual impairment) or other means to display our restrictions.

It is a serious issue.

Ps. Recommend reading this thread regarding impatience.. Google. Topic: supermarket shelves- beyondblue

Tony WK

The loneliness of hidden disabilities

Guest_128 — Wed, 10 May 2017 02:21:20 GMT

Hi all,

I have been trying to find a thread on

mental illness with learning disabilities?

I thought everything that is wrong with me was mental health. Apparently not.

i would like to work out what's what and try to help myself.

this is so selfish of me.

names

The loneliness of hidden disabilities

white knight — Wed, 10 May 2017 07:46:52 GMT

Hi names

Not selfish at all. I cant recall a thread on learning difficulties.

Sorry

Tony WK

The loneliness of hidden disabilities

quirkywords — Wed, 10 May 2017 09:19:28 GMT

Tony

Thanks for this interesting thread.

In last year or so I have been having trouble with thinking of very easy words and it is so frustrating. Of course I worry it may be early dementia but maybe could be medication. Not sure if that is similar to what you Kazzl have?

Short term memory mine is getting worse.

I think what I have learnt is to be patient with myself and others and never to judge a book by its cover.

I also can't tell my right from my left which is one reason I never learnt to drive.

9 names later

that sounds like it would be an interesting thread.

quirky

The loneliness of hidden disabilities

Guest_128 — Sun, 14 May 2017 22:20:20 GMT

Hey White Knight, Tony,

I don't know how to contact you other than this,

I would like to start a thread called something like;

Learning Disability ,Mental Health and memory loss?

Then post my story?

not it sure where to put it or if name is correct ?

Or if you would rather it say here?

Would like your imput please.

regards

Later

The loneliness of hidden disabilities

white knight — Tue, 16 May 2017 05:48:06 GMT

Hi later,

Most of my threads are in the section called "staying well"

At the top of the page of forums it says :all threads or topics" go to that then find staying well, click on that then click on "new thread"

Give it a go. You post could help others and remember, for one reply there could be dozens of people that read it but dont reply.

Tony WK

The loneliness of hidden disabilities

Guest_128 — Wed, 31 May 2017 10:32:57 GMT

Hi Tony WK and all,

I started a thread, Learning Disabilities, Memory and mental health.

Just thought I would let you know.

Hope you are well and keeping warm.

Later

The loneliness of hidden disabilities

white knight — Wed, 31 May 2017 12:06:54 GMT

Thanks later