Being in limbo is tiring

Hi lovely people,

I don't often feel comfortable sharing my feelings publicly. Maybe because I have most likely hidden my true feelings, and true self for a very long time.

I suddenly realised I am probably Autistic and very likely have ADHD. It only dawned on me when I was doing pre-assessment questionnaires for my daughter. It never crossed my mind that my struggles could be down to these conditions, mainly because of misconstrued ides of what these conditions are. I blame TV! I did not know anything about them until I had a reason to look into them properly and research them. Now I can't stop!

I was so happy to finally have a reason for being the way I am, but now I feel scared of being completely wrong and I won't get the diagnosis I've been hoping for. Being in limbo is so tiring and confusing. How can one go 37 years without anyone noticing what was going on!!! Now that I know a lot more about it, I find myself noticing so many traits that I have always had, but kept to myself. I have started to allow myself to unmask a little but only slightly. It feels strange. I've always wondered why I don't really know who I am; I am easily led, easily influenced, I don't know what I feel or what I might be exaggerating. I feel like I'm acting a lot of the time and don't know who I am deep down. I noticed a few years ago that I was frustrated all the time, mainly in work where there were no straight answers to anything or decisions that didn't make sense to me. No boundaries or set procedures. My brain didn't like this. But why all of a sudden was I letting myself show my true feelings - speaking out when I was frustrated, being a bit more open with my feelings. I suspect that I've hidden the truth (even from myself) for so long that I physically and mentally cannot keep it up anymore. I have always wondered why I can't control my emotions. Even in work. Crying is my default emotion! And I hate the fact I can't hold it in. It is so embarrassing. I have always felt like I take on the role as a child almost, and let others take the lead. As an adult, this is not ideal.

I struggle with loud noises, noises I don't like, mixed noises being played at the same time, noise in the background when I'm trying to concentrate on a conversation, people talking at once, bright lights, especially headlights at night, bright lights in the office, device screen lights, certain scents make me feel physically offended and unwell, anyone using my favourite mugs (lol) anyone not understanding me or not taking on board what I'm saying/struggling with, being annoyed at pretty much anything that doesn't align with what I feel is ok or right, not understanding what people mean or want from me in work - I hate feeling stupid, and get very frustrated when people aren't clear, I need simple instructions and usually need things repeating until it clicks in my head and I understand, I need to know the why, what, how of everything, I need to understand the ins and outs of things. I need time to myself a lot, somewhere quiet. I often need to sleep after work/school pick up. I just can't get anything done in the house, it takes me such a long time to get the motivation to do anything so feel incredibly lazy. 

From a young age I remember feeling lonely, weird, really sad that I didn't feel a connection to people and no one seemed to want to be my friend. I have lived like this throughout my life and just wanted to fit in and have some proper friends I can turn to. I never understood why I found it so difficult to make friends. I don't know what to say to people! Some days I don't talk to the other parents in the school yard because I can't face it. I have to force myself to leave the house sometimes. I just never understood my existence, like I have nothing to contribute. I worry that my child deserves better and everyone is better off without me. But not in a suicidal way, I wouldn't do that to my loved ones. However it is heart breaking feeling that way every day. 

I felt at peace when it dawned on me I was very likely "autistic". I felt so happy to finally belong. For everything to make sense. Now I'm just scared of feeling stupid if I get told I am not "neurodiverse" after all. Because then I will have had something taken away from me, albeit something that I never even had in the first place! 

Life is hard isn't it.

Anyway, if you've read this far, well done! Sorry for the essay, there's so much whizzing around in my head, it never stops. And no one really understands when I try to explain. 

So thank you for listening.

Parents
  • Hi, being in limbo is still much better than getting a false diagnosis. Unfortunately, this has happened to me. An occupational therapist has made the misdiagnosis. After this, I wrote a long letter to a responsible professor who wrote back and recognised that mistakes had been made... But, hey, what happened after? NOTHING!

    He (the professor) practically prohibited further discussion (he hasn't even responded to my last letter to him, and there was information in a leaflet that they would not support any further discussion). I know that I am autistic, but the diagnosis will probably never happen (not from my GP because they are done with the last response from the professor), and I will live in limbo until I die. Thank you very much.

    So, as you see, you are in a much better position because you probably will be assessed by a knowledgeable person and won't stay in limbo forever. :-)

    Anyway, is a diagnosis important?

    Not really, because you know deep down if you are autistic or not!

    Is there any help for autistic people? Unfortunately, for those who are "invisible" autistic, there is practically no help or very little help anyway. So, you will gain a piece of very valuable information about yourself (in case of correct diagnosis) which will help you in some situations in the future, but that's all.

    Enjoy your limbo anyway. Best wishes!

    Rhia

Reply
  • Hi, being in limbo is still much better than getting a false diagnosis. Unfortunately, this has happened to me. An occupational therapist has made the misdiagnosis. After this, I wrote a long letter to a responsible professor who wrote back and recognised that mistakes had been made... But, hey, what happened after? NOTHING!

    He (the professor) practically prohibited further discussion (he hasn't even responded to my last letter to him, and there was information in a leaflet that they would not support any further discussion). I know that I am autistic, but the diagnosis will probably never happen (not from my GP because they are done with the last response from the professor), and I will live in limbo until I die. Thank you very much.

    So, as you see, you are in a much better position because you probably will be assessed by a knowledgeable person and won't stay in limbo forever. :-)

    Anyway, is a diagnosis important?

    Not really, because you know deep down if you are autistic or not!

    Is there any help for autistic people? Unfortunately, for those who are "invisible" autistic, there is practically no help or very little help anyway. So, you will gain a piece of very valuable information about yourself (in case of correct diagnosis) which will help you in some situations in the future, but that's all.

    Enjoy your limbo anyway. Best wishes!

    Rhia

Children
  • Hi Rhia,

    I still don't know how professionals manage to misdiagnose, especially when something is so obvious to you. It's so unfair if they won't listen to you. I know it's not a cheap option but if you could somehow get a private assessment that might help put your mind at rest. 

    I hope you manage to get some help with it, so you won't forever be in limbo.

    All the best :)