Lived Experience Forum

[Cocoloco]

Hi there. Does any one have copy number variants linked to mental illness? I have two . Both say I have susceptibility to treatment resistant depression.

i am autistic and yes depressed. I however think environment plays a role namely trauma. I have ptsd, cptsd, adhd, anxiety and epilepsy all attributed to both mutations

i think growing up undiagnosed autism and the anxiety that goes with it was tough. Rbfox1 is on health line I regards to anxiety! Joy...... then it is one of the 44 genes in major depression. I was looking up help for depression as at the time mental health didn't care and I almost gave up. 

I know you don't get everything on these things. i am also experiencing musculoskeletal issues and hypermobility syndrome. 

how do you fight biology? Meds are complex and I am fragile. Paradoxical effects are common and dangerous ones too. 

also I like my mind. I think autism is pretty cool at times. I used to think it was just quirky me. Now I am sad.

I need help but I think it's about accessibility not a cure. I feel as if i will be gone. I want to learn how to get on better though.  How do you not sound like a hypocrite? 

i am like super awkward but kinda pull it off sometimes. I liked me once. Now I feel broken as I have been put down my whole life and this seems to confirm it. I really was missing (part) of a chromosome and had a long stretch of another! 

I am scared to post, I was told to and now really more sad. Even peers don't care. Called helplines and got referred but needed to talk bad about ptsd. Not hanging on. How do I win when the odds are stacked against me? Life has been a constant battle and I am not that resilient. I don't belong. I was stalked on autism Facebook pages. Had to block some one. he didn't mean harm,I just am triggered due to past. 

any suggestions? No generic look on this or that as it took over a month to get this far due to the layout. I try but needed help. I am ashamed to be alive i am always so sorry

[greenpea]

@Cocoloco  Hey Cocoloco and welcome to the forums. You will find quite a large crew of people with the autism spectrum diagnosis and those who are their families and carers on the forums. I have two children or should I say kidults with the dignosis. It is tough going I know..... you will find this site to be both welcoming and safe. Have a look around the various threads and maybe look at previous forums regarding autism, ptsd, epilepsy etc and post when you are ready or start your own threads. Again welcome. Love greenpeax

[Maggie]

@Cocoloco  Another welcome from me. 

[NatureLover]

Hi and welcome, @Cocoloco , it's good to have you here. That was very interesting, what you wrote about the genes, as I know nothing about it. 

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@Cocoloco wrote:

i am autistic and yes depressed. I however think environment plays a role namely trauma. I have ptsd, cptsd, adhd, anxiety and epilepsy all attributed to both mutations

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I am sorry to read this...so much for you to deal with. I'm glad you didn't give up. 

We are here to listen and try our best to support you. I'm not quite sure what you are asking for suggestions on...could you elaborate? 

If you want to let someone know you're replying to them, you can type @ and click on a member's name in the drop-down box. That way they'll get a notification and won't miss seeing your reply. 

[Cocoloco]

It is thought that the genes are responsible for predisposition to treatment resistant major depression, autism, anxiety, adhd and epilepsy at present.

Also schizophrenia and bipolar for one schozoaffective for the other, intellectual disability and Alzheimer's for both. I don't have these

one affects neurotransmitters. It's involved in attention cognition and memory. The other critical for neurodevelopment and both cause issues in muscles etc 

it's not destiny I guess. I wonder if hypoxia at birth was cause or effect. If trauma or ptsd triggered depression. If being autistic even just makes people depressed as accomodations are not built in for us. 

I believe it's interesting. I however wonder if there are people out there that know what the odds are of beating biology. Before testing we knew it was genetic. Mum is schizophrenic and that meant I had an increased risk. 

I really don't know if it changes things. There is a mixed consensus. I believe so as comorbids are high and I keep getting insults to my limbic system😂 

ptsd and cptsd are environmental. I just know that science isn't there yet. I feel like people think it's too much. 

I am wondering if it impacts recovery? I have heaps of people in the family with similar and it's been difficult for them. Can I get better? Do people think environment is part of the evolution of mental illness too and making changes to it can help. 

for instance people making communication allowances like writing stuff down. Key points. 

@NatureLover  Thank you

[NatureLover]

That's interesting, @Cocoloco  - thank you for the information about genes.

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@Cocoloco wrote:

I am wondering if it impacts recovery? I have heaps of people in the family with similar and it's been difficult for them. Can I get better? Do people think environment is part of the evolution of mental illness too and making changes to it can help. 

for instance people making communication allowances like writing stuff down. Key points. 

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I reckon environment plays a part in mental illness, yes. I think writing stuff down is a fine strategy. 

Regarding getting better, I think that with serious mental illness and PTSD, it may not be possible to get 100% better, but rather to manage the illnesses to have the best quality of life possible. I definitely think a lot of improvement is possible, along with good conditions (environment) and luck. 

Not sure if that's helpful at all, @Cocoloco ...

[Appleblossom]

@Cocoloco  Hello and good on you for posting.  It is such an important topic.  I def think environment plays a role in mental health issues, though exactly what role it plays is still being worked on.  It is something that there is a lot more awareness of psycho-social issues.

I grew up with lots of people going on about schiophrenia being genetic, (both my parents apparently had that dx) which was a short hand but inaccurate take on the scientific stance which is that genetics can effect "predisposition" to illness.  I have been thinking about these things for a long time. I am bit aspie, have not got the spare cash to pay to get a Dx.   Now they say that many people were overdiagnosed with Schizophrenia back then and that is true. Some say too many are dx with autism now.  SO much for all the stats.  I last did stats in 2nd year and take a very laidback stance about it al now, as I worked with numbers a lot and did other head work and have one constant headache now.

Luckily, or because of all that, I did do a bit of science so not scared of it. Not terribly up to date, noticed all the new genome stuff coming through and figure all the testing is at atm is just giving ... stats, the chances of ... but the truth is each person is unique ...  you are the only one with your particular genetics and experiences ... even the old twin study thing has lots of curly issues with it ... and then they ndiscovered epigenetics and RNA was important not just DNA ... pdocs are writing the rule book a bit as they go ... IMO ... there is also a rule in stats which says each statistical event is unique. I see a lot of misuse of stats all over the web.

Be patient with the forum, as people come and go and often only have time to look at some posts, or are burdened by their own concerns.

Its really good to have a range of views and experiences so join on any threads you feel are relevant to you.

Cheers Apple

[Gwynn]

also I like my mind. I think autism is pretty cool at times. I used to think it was just quirky me. Now I am sad.

I need help but I think it's about accessibility not a cure. I feel as if i will be gone. I want to learn how to get on better though. How do you not sound like a hypocrite?

I was also born with a disability and I feel you on this point.  Like, whether getting on better means you're erasing some part of yourself to do so.  There are some hurdles you've just got to jump over despite having no legs and few spoons to do so and there are some hurdles that you can ask for help to avoid, I figure.

I don't think you're erasing or rejecting some part of yourself to get on better, in the same way you're not rejecting your natural naked state if you put on clothes before going outside. 

Something that really helps me in the self-acceptance stakes is meditation - have you tried it at all?

Some employers do 'get it' in terms of accessibility these days, have you seen Employable Me on the ABC? https://iview.abc.net.au/show/employable-me-australia  Also it's just a great chance to see autistic folk on TV.