Explain myself..

paula_artist

Hi Gogo21. Hi. I understand totally. I have a movement disorder. Sometimes I scream. Or make noises. I used to apologize all the time. A cafe owner told me off. He said doesn't matter what people think. This is me now. Finally I accept this. I've been like this for 6 years. Can't drive anymore. This is me now. It does get easier. I even had a cashier say to me. Why don't you wear a badge saying I TICK COS I CAN. 
She said sod everyone else. 


 said:

Hiya everyone.. I'm new.. I'm not sure if I'm posting in the place.. But was just wondering how people cope with having to explain your illness to people . I sometimes feel like giving people printed hand outs of my conditions and how they affect ... It drives me insane the judgement I receive . Especially from my close friend who are supposed to be there.. I'm not moaning just looking for genuine advice.. Thank you 

paula_artist

Oops. Don't know how. Posted like that. Sorry Gogo21.

Gogo21

No worries @paula_artist

susan48

@mikehughescq, Iv been trying to explain for so long and either it falls on deaf ears or the person isn’t interested, that’s why, in my experience, I just now say ok.
Unless they ask further.
 I’m glad you find explaining rewarding, trying to let people know about the problems, illness etc, educating people.
Actually Iv just wrote something important, education is so important, with MH and other invisible illnesses 

sandyp196

The psychiatrist printed me out a snapshot of my condition and gave me enough copies to hand out to my family.  It just gave an overview of the main points of my condition. I appreciated being able to do that. I'm not bothered if my family read the pages or not. But I gave them the choice and they can no longer use the excuse that they don't understand my behaviour or the way i live

endo64

@Username_removed i would like to spend the day with students then ask them if they found anything different about me. The feedback would be interesting. As a SEN Educational Engagement Consultant I also teach equality & diversity having studied under Professor Adam Barnard @NTU i am interested in what othrrs notice about us. As a high functioning asperger individual I find i can function at my best within  educational settings where my educational ability is the measure by which im graded not my age physical ability nor which social group i belong. Learners are interested in learning not me.

thespiceman

Hello @Gogo21 Pleased to meet you sorry to say what is happening. I think all the comments are very understanding. It is not easy none of us want to be asked or tell others who wish to know.

Honest and openness is the solution I have found.

I have disability you can see, yet still get the questions.

Then have mental illness you can not . So it always annoys me that the questioning of any body about illness or disability. Acceptance is the norm, should be.

Different with medical professionals or maybe close friends. Always be honest up front and need to discuss what is bothering you.  If they are asking you.

Also be aware of you own frailties and state of mind.

I am a gentleman of a certain age and time. Discussing illness and disability strange for me.  Will just get on with it. Several times now have to talk about what is bothering me. To doctors and my friend.

Have to put my health first and think of me. So talking is important.

Take care

Gogo21

Thank you.. X

whistles

Why do people feel they need to explain? 

susan48

@whistles
I think because we feel we need to justify how we are, we don’t have to but, I did that very thing yesterday during a phone conversation.
i couldn’t remember something and started stuttering, the person asked if I was ok and I found myself trying to explain myself instead of saying, yes or no and ending the call.
Iv always done it so it’s a hard habit to break 

whistles

I am a need to know person. If you need to know you will, you have to be in my small circle of day to day friends/ community.

I do carry medic alert stuff, the people that really need to know, will know.
(you wouldn't believe how many drafts and rewrites I have done since!!!) 
It's bullet points with a left out bit that might make the person think I have three heads or MH issues. Not ashamed of my anxiety. But it comes down to that having to explain things and feeling like a twit and embarrassed that causes me problems!! 

You need the 'I get claustrophobic about that' and the reply to be ok that's fine.
Instead the 'I get claustrophobic  about that' is met with what, really. So, and our worse.

fishingmum

I used to feel that way about my son, and try to explain his condition or behaviour and it really is met with a cross between idiocy and lack of care. I realised the best thing was for me to be honest. for example on the 4th speech and language therapist (3 previously had sent him off for hearing tests as they thought he was deaf due to him completely ignoring them all test came back showing he had normal hearing) I stated we had went through 3 previous tests and he is fine, she was saying no due to him not even blinking an eye when she clapped her hands

 It was that point that made me change the way in which I dealt with it. I stated to her, If I were you I would take it personally, he does not like you. When she attempted to talk me I pointed out that considering she deals with children of all abilities she should be more than aware of how autistic children can be with strangers, if she is unaware and does not understand time for retraining.

I now just he is autistic when he is having a bad time, a meltdown, or not coping. If those people do not understand that is not my nor my sons problem, if they want to learn there are plenty of free resources out there for them to do so. I just do no let them have rent free space in my head any longer. Those who are worth it will understand and take time to understand, those who don't are not worth your time. Life is too short to be unhappy.

Gogo21

All the answers have gave me alot to think about ... It's kinda made me realise how much explaining I do do.. Maybe its time to care less about peoples judgement .. Maybe I need to stop justifying my existence so much.. X be honest if I need to be with people who need to know but otherwise.. Why worry . Thank you so much for everyones help 

fishingmum

I hope you are ok @Gogo21 I think it is human nature to need to fit in and be part of the group and we always look to explain ourselves to those we care for and we want to care for us. Sometimes you need to start your own group or find one that you fit into with explanations needing to be said.
The shortest sentence in English is " I am." that is all the explanation you need to justify your existance.

Gogo21

Thanks you I'm ok... @fishingmum .. I think I'm just learning to properly accept my conditions.. I'm just learning I need to be my own advocate.. X

stephenjohn

      Oh how I wish that health professionals would read notes and talk to each other ,it infuriates me when I have to continually explain why we are at a specific place ,we often get asked “why are you here” because my doctor referred me .......read the notes ......my wife has non epileptic seazure syndrone and can collapse at any time ,out cold but because she doesn’t look ill she gets treated like a social leper..........how often do you get that look from people that says ......yea ok ! 

whistles

People on here don't care about your conditions and are not judging you, so why let people into your life that you have to keep explaining things to. 
Life is a struggle already without other people's baggage. 

I have a common condition which presents itself in a rare way. I had five years of the wrong meds, treatment. I was mistaken many a time for showing a variety of social unacceptable behaviours and treated as such by those responding.
Sometimes the ambulance crew itches their head, not great, but READ the alert info its there for you guys because apparently you know where to look and we hope you do. Not always the case but that's another post!