Lived Experience Forum

[JT]

Yes, this is a rhetorical question.  I work within the mental health field and my mental illness is the reason I work where I do; without it I wouldn't have the position.  One of the reasons I am where I am is because I am stable enough to lead by example and do what needs to be done yet still have the consumer perspective.

As a new position I've spent much of the last couple of months meeting people and telling them about the position to people who are on the whole welcoming, accepting and have used me (or perhaps utilised me would be a better terminology there) to achieve a result.  

Naturally however there are still many who do ask what is my lived experience/my diagnosis and then scoff and say I don't look like I have bipolar or better yet I look too stable.  When buying an apple you know you are getting something with similar colour and taste but no one expects any two apples to be identical lol.  

My tongue in cheek comment to a colleague when I relayed that latest look of disbelief was that perhaps I should stop my meds for a while and then invite the "disbelievers" along for the ride?  

[CherryBomb]

Hey JT,

Great question, I've often thought about this. It seems there are many myths about MI, which stem from misinformed perceptions. 

I think the less people know about something, the more they assume, and the more they assume the easier it is to pass judgements. 

The question you ask, 'what does mental illness look like?'is a great question, and I could go on forever trying to answer it. It's a big question! So I thought I'd start with what it is, and what it is not, with one myth that I often face in every day life. 

Myth

People with MI never get better -  A myth / perception that many people have (as in the instance of your workmates) is that people with a MI cannot lead a functional life.

Buster

The reality is that with the appropriate treatment, and support many people with MI get better and get lead healthy and meaningful lives. 

Any one else got any thoughts about what MI looks like?Or encountered myths about MI? Please share.

CB

[Denv12]

Over the years I;ve heard so many offensive comments from those who arent ill tell us,who are ill, what to do.Someone once said to me about the cfs and ocd,why dont you just stop having it? Do you think actually understood what they're saying? No they dont.They havent got it.They will if they get it.

When people are healthy anhd they dont have a health issue/disease/mental health problem then they dont understand what sufferers go through.But I know that some of those healthy people did end up becoming sufferers themselves when their lives changed.Suddenly they can relate.I've thrown their comment back at them to see how they take it.And they were offended too.

When we are in good health and going about everyday life we dont know what a sufferer is going through.We cant relate to it.Knowing now that we are all venerable,yes healthy people everywhere, are NOT immune from any health issue then when they become ill at least we can educate them to some degree.

You dont what something is like until you've tried it or you've got it yourself.

Chris.

[JT]

People are especially ignorant of what they cannot see.  CFS has always been looked upon as an imaginary illness even by doctors though thankfully that's improved over the years.  I was diagnosed with CFS when I was 19 after a couple of years and only after the upteenth doctor I saw had just read a paper on it.  I could never understand why anyone could possibly think I was being so darn exhausted and unwell just to get attention.  All I got was people ridiculing me for falling asleep at the movies and complaining because of my 'lack of enthusiasm'.  Until they get it, they won't get it. 

[chemonro]

You're right, Chris! 

[Denv12]

Hi JT.

I'm not alone in this forum as a CFS sufferer.I'm glad you can relate /understand what I'm going through.

Knowing that everyone is vunerable is somehow comforting.

[Alessandra1992]

Hi JT,
My mental illness looked and felt black,hopeless and helpless. Didn't like the way it made me think or feel and stopped me in my tracks on more than one occasion. Flight or fight response magnified.
Then there's the other side which can be angry and mean and bitter and twisted. Don't like that either.

Know exactly what you mean when people have reflected that I don't fit their perceptions of what mental illness looks like...but what I think is I am pretty similar to most folk, I have 2 eyes, 2 ears and a mouth..I sometimes wonder whether mental illness is the last bastion of "The Bogey Man".
Don't get me started...but seriously MI can and does affect anyone at any time..thank goodness more organisations and people are tackling it and not sweeping it under the carpet...although my cynical side says progress is a bit slow going by some of the experiences I have been reading about here..

[chemonro]

What does mental illness sound like? I spend a lot of time on the phone talking to people at all stages of their journey. Sometimes you can hear instantly that something's not right: talking to slow, or too fast, or slurred speech.

Sometimes mental illness "looks like" poor problem solving skills: getting really dug in or worked up over worrying about things you either can't change, or are in the past, or can't be tackled until you sort out more basic things first. It can be as simple as taking things in the wrong order.

Mental illness often looks a bit like being so caught up in your own needs and problems that you forget to listen to anyone else. It certainly sometimes looks like locking yourself away from the world because the pain is too great.

And it can definitely be around suffering so bad that you just want it to end. 

Thoughts only. 

[ivana]

Many doctors still “don't believe in“ regarding CFS and think it's psychosomatic.

Elucidating What is mental illness is impossible until we demand Psychiatrists stop focussing on labels and start focussing on looking for causes.
Eg:You can have 3 people present to E.D with “bizarre behavioural symptoms“.
They might all receive a “diagnosis“ of Schizophrenia“ but all three of their illnesses are going to track a different cause and have different outcomes depending on what caused the symptoms.
Eg:An 17 boy experiencing paranoia from smoking marijuana's experience is going to be vastly different from a 60 year old malnourished woman “presenting“ with bizarre behaviour or paranoia but many doctors will often treat them the same.

Generally,as most on this forum know,mental illness experiences are vastly different + individual.
There are also certain illnesses that can have both physical and mental manifestations eg:thyroid disorders, encephalopathies,vitamin B12 deficiency etc..
These are often overlooked by many doctors and the public lack awareness of them.

The public is often ignorant regarding peoples mental health experiences or don't know what to do.
People will also give you answers such as “you don't look like you have mental illness...“ not always from ignorance regarding how it should manifest but also from the huge stigma that still exists
IE: some people might think their almost giving you a complement by saying that like “wow you seem so normal“

Part of stigma in society comes from us all needing to appear normal,keep it together and people fear that people would call them wierd,crazy etc if a mental illness happened to them.
This is why doctors rarely disclose their mental illnesses,due to fear of judgment and discrimination from their “peers“.
They worry that their “peers“ will use this disclosure against them to claim that they are incompetant to practice due to their mental illness.
The reality is that it is often used against them.

Part of the problem too is that most people tend to think in extremes.
IE:some people believe that all with mental illness can live happy,productive,fruitful lives if they just recieve the right medications etc...
Others believe mental illness means all “lose capacity“
Both are half truths though and the public should be made aware that many with “so-called“ diagnoses can achieve huge things-like anybody else-but at the same time we shouldn't delude ourselves from the truth that some with severe mental illnesses have severe permanent cognitive loss similar to Dementia and society shouldn't “leave those behind“ or neglect them.

[kato]

interesting question what does mental illness look like/sound likethe answer issimple it looks anf sounds just like you me ben down the road karen at work it takes the shape and the voice of anyone regardless of their position in life that homeless guy might not have any MI issues but because he is homeless people instantly presume when in reality that guy in a suit is more then likely suffereng with a serious MI you can't put a face or sound to it. that girl at work who seems so bubbly and extrene with her moods might have ni MI she is just excitable. but the really nice guy who is extremely well spoken, dressed nicely, clean shaven except for the nicely trimmed goatee, quiet, smart, attractive, seems so calm and relaxed, and non plussed or fussed by anything in the world, yes that guy might just have quite extreme rapid cycling bi polar disorder with psychotic episodes lol the best way to judge is not to judge at all. You cant tell by looking at someone or hearing them talk unless at that moment their symptoms are at a heightened amount ie. Quite noticeable. I have dealt with a few people who have had various MI issues a couple I found out recently have been suffering long term and I never noticed any symptoms we learn quickly how to hide what is wrong with us for fear of being judged.
I am Anonymous and I have been suffering wuth rapid cycling bi polar disorder with psychotic episodes for 6years yes the amazing guy described above was me describing myself lol.
I tell people who have met me a few times that I havr MI and they don't ever believe me I hide it well.... removing the stigma is able if we the sufferers recognizing that we have an illness and seek assistance when required not try and hide it until we break will I believe help the stigma. I get judged all the time by everyone I see because I too judge them and I don't know them. It is unintentional my brain just does it. I don't then decide on that to not respect the person or anything if we believe we are being judged because of it then take amusement in the fact that you are living a very successful life with a illness that is unfathomable in its inherent problems dealing with simple life situations. If you meet someone who does judge you and make you feel unhappy then turn it around, ask them calmly remember we are on control, simply respond by saying put yourself in the shies of someone suffering from multiple cancers in their body they have no energy they are tired, now imagine if I had that? And you might get a idea of the difficulties I face with day to day life. I did that to an idiot of a dr early on and he went bright red and started crying, he apologized for judging me I told him it was ok because it was for me I an happy with what I have I do not like myself tho but I am happy lol sorry feeling veey up again time to strap in for the fun rollercoaster until tomorrow when all going to plan I will find my psychiatrist and get on the road to management of my health oh and thank you everyone for putting up with mt ramblings
Peace out