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Being in limbo is tiring

Seren fach

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.

  • in reply to JJ

    Hi JJ, 

    Thank you for your lovely reply :) I love the way you describe that as "open or closed". I completely relate to this; I can only really talk about things if I am feeling open. Some times (especially if I'm tired or particularly stressed) I feel myself being completely shut off to people, and I feel like I'm being so rude as I just can't engage. My moods overwhelmingly eminate from me! I can't hide it.

    Since finding this warm space, I feel so much happier within myself. But I do doubt myself and worry that I won't get the diagnosis I feel I need. I have accepted myself a lot more though and there's a calmness to that. 

    Thank you for pointing out that I have kept it together and under wraps - I don't feel very together at all! I don't quite know how I've managed to be honest, but I suppose I have, and I am starting to allow myself to feel proud of what I've achieved, whilst constantly battling underneath the surface! 

    I have looked into a private assessment but so far have not been able to get anywhere. I guess I'm reluctant to take the plunge in case I don't get the answers I am looking for. I love that you did the math though :) I can't do math!

    Thanks again for the lovely message, it means a lot.

    Best wishes to you, and have a wonderful Christmas :) 

  • Hi,

    I read everything you wrote there and lots of things described how I felt in the 'limbo time' - the very specific gap between 100% knowing inside that I am Autistic and actually getting a formal diagnosis.

    Once I had internally accepted it and started reading more (especially about the casual, not really impactful) quirks that we all share, there was one after the other of realisations - in a positive mindset I would call it an epiphany, in a negative mindset I would say 'oh FFS ... yet another stereotypical trait that I have forced myself to ignore - how could I have been so blind to myself for so long?'

    If anything you might take heart in the fact that you have managed to keep it together (and under warps) for so long. That's a strength, in my opinion, and not an indicator that it's only a 'mild version' of autism or something. You can have very big challenges but also be a very very strong person to be able to keep all that in check, have a job and a family.

    I was terrified about seeking a diagnosis - I felt like I may have built a house of cards, and it all suddenly made sense - but had to submit to someone else's judgment (who will interview you once or twice) - not your own understanding of yourself who you have lived with since .. birth! And how articulate you might be on that day and how open or closed you are on that day... (NB They are MY insecurities - please don't take them on board if you don't share them!)

    As others have mentioned - once you know how the the waiting list might be also find a price for a private option. Maybe a bit of cold rational maths might help you choose: wait 3 weeks and pay £1300 ... wait 3 years and pay nothing (or imagine saving up £8 a week for 3 years to move the situation on). I know it sounds like a emotionless way to approach a topic so fundamental to one's being but, speaking personaly, I would have [**not survived] the wait.



    Anyway: you got this, and there's a community here who absolutely gets where you're coming from.

    Best wishes.


  • in reply to Rhia

    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 :) 

  • in reply to Catlover

    Hi Catlover, thank you :) 

    It is the strangest thing isn't it, suddenly everything seems to obvious but it's such a massive shock. I think it must be due to not having the full information and knowledge of autism so not being able to connect the dots. 

    I hope you are feeling better now, following your shutdown. Wishing you all the best with your assessment - good luck

  • Someone posted something very similar recently. Just know that you are not alone. I realised when I was awaiting my daughters first assessment appointment. I have no idea why I didn’t know! It was a shock.

    I’ve written this before on the forum, but I put it out of my mind for a year. Then I had a shut down. Couldn’t do anything for weeks. Signed off work. Since then, I’m trying to rebuild my life with this new knowledge.
    Instances pop up in my mind daily. If not hourly! I’m remembering things from my youth, and then wondering if I’ve made it up. I’m now doubting whether I am really ND, especially as my assessment is creeping up on me.

  • 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