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Resonar
Casual Contributor

30 Years of an unchecked diagnosis.

I'm not sure I can even accurately communicate my experiences.

 

I've been living with for 30 years what has been classified as upper extreme dysfunction ADHD. Only being diagnosed in August of 2023. At the point of writing this I've been medicated for approximately 2 months.

 

My experience with medication has been able to get me to physically functioning, I can remember to eat, exercise and do tasks that everyone labelled me as lazy or incompetent for being unable to complete in the past. I cried the first time I took the medication, as my head was calm for the first time in my life and I didn't know what to do with that.

 

My medication stops me getting into states of cataplexy or catatonia where I am stuck in my own mind in my house, unable to execute a single task because I am bombarded by my own head internally.

 

I would like to note, that my ADHD paralysis is almost non-existent when I have external support or even just the presence of someone who cares.

 

My diagnosis was found after my symptoms became severely unmanageable after the suicide of my closest friend. I have family, but none that understands me, cares enough to try to understand me, or still holds enough of my trust for me to talk to them on any meaningful level. This has been directly and verbally expressed by my family to me.

 

As further context my family life was highly dysfunctional, in hindsight some of these complications could be attributed to ADHD symptoms, and whilst that may be my fault, I didn't have the awareness to manage it and I was also still just a child. The day I left home was under threat of gun violence.

 

I managed to seek professional help when my grief escalated in the wake of my friend's death at the beginning of the year. She was the only person who I had ever felt truly like they were my family. Please note the relationship was entirely platonic. They were the only person I had ever had in my life that didn't set expectations of me that would set me up for failure, they would never judge me for the outcome, but simply my efforts.

 

I find when trying to relate to neurotypical people, their expectations are very process and outcome focused. Which leads to me being unable to follow these strict procedures deemed "normal" and ultimately having a different outcome to what was assumed. This became cyclical and people would inevitably give up on me or discard me, whether that last part is objectively true or not I don't know, but it was and is how I feel and is therefore real and relevant.

 

Leading up to my appointment for diagnosis, my partner of approximately 2 years was becoming overburden by my needs, losing a major part of my support network meant that all my needs for; friendship, intimacy, family, and sense of community or connection, now heightened by grief , fell heavily upon her. Unreasonably so as no one person is able to provide that. Overwhelming and burdening her, and inevitably leading to our break up.

 

This in turn lead to some pretty significant emotional dysregulation problems for me, after a lifelong feeling that people inevitably discard me, now the person I loved and needed most at that time was done, gone too from me but still here just out of reach. I'm not proud of it but that level of humiliation, lead to some very unhealthy contact between us in the proceeding weeks, I tried to understand her post break up needs, but the expectations were not something I could reasonably achieve and I inevitably failed those outcomes and my problematic cycle was renewed. Despite my best efforts all she could see was me "not trying hard enough" to respect her boundaries, even though the level of effort I had to put in which was feasibly normal for others, was causing me physical pain, primarily from bruxism (partially a complication of medication) and increased levels of stimming behaviours that would wear out my knee and cause jaw pains.

 

And now in trying to better myself, and be healthy and well, I've found myself stuck at a new wall. I can do everything I need to do for myself, but the next thing I need to be able to fully self-actualise, find purpose and fulfilment is something that needs to be offered freely by others. I can't give myself a sense of community and belonging, I've been trying to reconnect with people from my past, forge new connections, and even attempting to reconcile with my ex (this part did not go well, as my emotions were getting in the way of my clarity to explain and attempt to educate on the effects of my condition).

 

But being the "invisible" disability, people seem to just palm it off still, and whilst work and study can be accommodating with reasonable adjustments. I can't find people willing to do that on a social level, and I am constantly forced to mask and exhaust myself in self-regulating, and feel unable to find a space to just be me.

 

That brings us to this morning, feeling I had no one to ask for help. I reached out to Beyond Blue who sent me here. To say the least after my discussion with them I felt even more isolated and disconnected from other people, but I thought it was worth trying here.

 

Does anyone else here share the experiences on both being upper extreme severity for ADHD, whilst also having had it masked by being classified upper extreme for cognitive function (generally referred to as "gifted child")?

 

Constantly having high external expectations for success, whilst being thrown into a system built for your failure, and being judged exclusively based on those outcomes.

 

My two analogies that have had some success for explaining my feelings;

 

Societally being a square peg in a world of round holes and watching the confusion of the round pegs when I can't move through the holes the way they do.

Being given a hammer and being asked to finish knitting a blanket, and watching people wonder why you smashed it to pieces instead. My medication makes me feel like I at least have a needle for about a third of my day.

 

Thank you to anyone who reads this,

 

I don't want sympathy or pity, so if you choose to respond please remove that from what you are saying, as with professional help I have identified this as an emotional trigger for me.

 

Alternatively, I hope this can help someone else feel understood, and I would love more than anything for those people to reach out.

12 REPLIES 12

Re: 30 Years of an unchecked diagnosis.

Hi @Resonar

Thank you for sharing. I just wanted to hop on to let you know that you are not alone.

I do feel understood and I understand.

I have had my own journey on being neurodivergence and it be really hard when it comes with so much.

Sending you lots of light as you navigate through this,

fluffylight x

Re: 30 Years of an unchecked diagnosis.

Thanks @fluffylight 

 

It helps a lot to know that someone is listening.

 

I hope you also fare well in your journey, and know that if you ever need to also share there will be others to listen.

 

I sincerely wish that the light you give so freely finds a way back to you and can brighten your day, just as you have done for me now.

 

It gives me hope that I am on the right track.

Re: 30 Years of an unchecked diagnosis.

Yes, you have a community behind you here @Resonar 

 

I recognise it's not easy, but it's certainly a start. These forums were invaluable to be during my recovery.

 

I hope you find the connection and belonging you deserve.

Re: 30 Years of an unchecked diagnosis.

Thank you @tyme,

 

I think when I was writing and reaching out yesterday I was somewhere in the realm of breakdown/breakthrough.

 

I think this could be summed up as a mix of medication rebound and noticing the end of the honeymoon phase with medication/treatment.

 

Considering it gave me so much perspective and a way to work on things, I'm going to at least tell myself it is a breakthrough.

 

Writing helps so I'm going to keep doing it.

 

Going to keep writing and reshaping a book I'm working on that is a good hobby based distraction, keeps me productive and provides a creative outlet, might try joining some sort of writing group so I can build community along with it.

 

Also realised when it comes to reconnecting with people that seem hesitant, resistant or reluctant, I can just hand write a letter and leave it unsent, requiring the postal service gives me much more time to halt any conflicted emotions. I feel this is significantly better than typing a text/message on social media where it is too easy to give in to the impulse to press send.

 

Feeling significantly better today thanks to the support I received here yesterday, and the kindness of some newer connections in my life.

 

Sometimes the process is slow, but we have to get back up even when we fall down. One day, one step at a time, building the foundation for our success.

Re: 30 Years of an unchecked diagnosis.

Hi @Resonar 

 

Just popping in to say hi. So great that writing is helping you. Are you able to share what sort of book you're working on? I love to write. I used to be a journalist.

 

Looking forward to seeing you around 

Hanami

Re: 30 Years of an unchecked diagnosis.

Hey @hanami 

 

Thanks for popping in.

 

The working title is "imprecise morality" it is part moral philosophy part elements of my own story, and a mix of attempting to reconcile the two with the understanding and perception of the world around me (or us in broader context).

 

I might post pieces that I think could help others once I'm comfortable sharing. Or maybe you'll see it on shelves in the future.

 

 

Re: 30 Years of an unchecked diagnosis.

Wow, @Resonar that sounds mightly interesting!

Would love to see it some day for sure. Whether it's here in pieces that are helpful or on the shelves.

Hanami

 

Re: 30 Years of an unchecked diagnosis.

I can see you have the craft of writing @Resonar . Your posts are so well written and so heartful.

 

I'm glad to hear that for you, writing is powerful. 

 

Words capture the heart.

 

Words reveal the heart.

 

Words are at the heart.

 

Thank you for trusting us and sharing your words.

Re: 30 Years of an unchecked diagnosis.

Thank you @tyme

 

I feel lucky that the community here has made it easy to share.

 

I will continue to write, as an outlet for my own purposes, and here as well in hopes of building a strong community for anyone who may need it.

 

If it is what I can offer others within my power, then I will give it freely so that it need not be asked.

 

Where "Labour has become not only a means of life but life's prime want" then mine shall be a labour of the heart.

 

Forgive the potential politicism in quoting Marx, I mean it for its poeticism.

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