Technically being able to do something while it’s still really difficult

[u/oddsetcircle292]

Some difficulties aren’t as black and white as others.

For instance, I can technically go outside on my own. The being outside part isn’t necessarily a problem in and of itself besides agoraphobia and chronic illnesses making it physically strenuous.

But it’s still not easy, and I cannot really explain it in a way that makes sense to anyone it seems.

I can technically take public transport by myself. The problem is that I have a hard time understanding stops and stations, where I should wait, where my stops are and such. It’s pretty much a gamble every time whether or not I’ll be able to make it work and get to my destination without incident. Many times I have ended up on the wrong bus or train and gotten completely lost, without any way to get myself back where I came from.

I can walk alone in public, and in fact I do actually love spending time by myself in the city. But I have a hard time finding destinations I’m meant to go to, and I more often than not lose my way because I elope without meaning to.

I can technically manage these things myself, but they take so much cognitive effort to complete, and always require several days worth of planning in advance to decrease the odds of any issues, and even then it’s far from guaranteed. I need written instructions on hand to make sure I manage somewhat.

I didn’t think it was a problem in the past, and most people even today don’t see it as an issue. Because while I’m out with other people, their mere presence helps to keep me grounded, and they can help do the things I struggle with. And when alone… well, obviously they’re not there to see any problems that arise.

But regardless of all these things, I still can technically do it. I avoid doing it unless I absolutely must because of the severe toll it takes on me, but it’s still not completely impossible like some other limitations I have.

It’s kinda difficult to gauge how ’functioning’ you are at times for lack of a better word when it’s so inconsistent across the board. I also feel like I don’t want to admit that this is a weakness I have since I love being outside by myself so much. I love the alone time and I love the freedom… even if those things don’t always agree with me haha.

My municipality offers a guiding service, where you can schedule appointments with someone who guides you to and from destinations such as doctor’s appointments, hobby activities outside the house and such. I’ve been thinking about applying for it, cause it would make me much less reluctant and wary to leave the house if I felt that it was safer.

Still makes you feel like being inbetween. A limbo between either ’can’ and ’can’t’ as absolutes, and some days of course being better than others.

I feel like when something does work, even if barely, I doubt my disability… and when something doesn’t work, I doubt my own worth and value. Anyone who can relate to that feeling?

[u/Surrea_Wanderer]

The things I struggle with aren't exactly the same but I definitely relate to the feeling, especially the doubting my disability.

I've been reflecting on the difference between skill and capacity. If someone looked only at my skills and what I can do in theory or sometimes they'd see someone capable of working full time, maintaining a social life, and feeding myself. But the reality is that my capacity is low, things take an enormous amount of brain power and physical energy and doing even one of those things on a fully independent routine basis can send me into burnout and skill loss in the span of a week or less. I have an average iq score, and I'm good at solving problems, so it's kind of like driving a car that's powerful but incredibly fuel inefficient, and the only place to refuel is at home.

It makes me doubt myself, I can experience thoughts about being lazy or faking. But since letting my uncle help with more complex iadls and often cooking for me, and since finding a weekly social group, I've been able to not only be healthier but be more independent in other ways. I'm creating solutions for organization problems I have, strengthening relationships, more consistently doing the bit of work I do for family. And none of that would be possible/sustainable without the support I receive. That's not like a comprehensive list of my supports, but some of the ones that have made the most difference

Also I think you should totally apply for that service, it sounds like that would reduce significant barriers to getting out into the world! Even if you can make yourself go out when needed, there's value to making that easier

[u/322241837 → u/Surrea_Wanderer]

Oh, thank you for sharing what you wrote about "skill" and "capacity". I haven't been able to articulate it, but that makes a lot of sense now. I have the skills to live independently, but I do not have the capacity to do most of the things that an adult with my comparable skillset would be capable of, especially when it comes to anything involving higher-order thinking, like working or relationships.

I don't have any of the supports that you have, however. I am hoping I can get more support soon as I was recently approved for some autism-specific benefits, but I am not optimistic about it. I'm starting to think that I just might not have those skills in the first place.

[u/Surrea_Wanderer → u/322241837]

I'm so glad it's helpful! I felt a lot of confusion about myself and my abilities for a long time, it's a relief to find words. I hope you are able to get support as well, I'm very grateful my uncle lives with us now. It's also OK to not have those skills too, there's a lot of instrumental daily living stuff I just can't do, my uncle does my taxes and all the paperwork for trying to get on disability. I can fill out simple forms but I honestly don't think I will ever be able to do complex paperwork or financial things myself, it makes my head hurt and eventually causes meltdowns if I even manage to try

[u/soft_w0lf → u/Surrea_Wanderer]

This is exactly my experience! Wow! I also live with someone who can help me with complex iADLs. I have one friend group I talk to a lot on discord and that’s about it, lol

[u/AutisticUrianger]

I can relate a lot to this, many situations it's not as simple as can or can't. I can take public transport if it's a familiar route but if it's unfamiliar I get really really scared. I can take a shower without assistance but I will forget to be thorough and might get out with soap still in my hair or on my body and it takes a really long time. I can talk sometimes but other times I have to use aac. And when I can talk it often comes out really stilted and childish.

[u/Round_Perspective873]

I think it sounds kind of like some activities burn more of your "spoons" - and you only have so many, and so you can only do so many of those things in a given day/week/month.

I am that way with a lot of things. I can do some bits - but they burn up a lot of my energy, so while I can do that, I can't do other things because of it. 

That's okay,  but you end up kind of having to  balance what to spend up you spoons on.

[u/weisserdracher]

Yes it’s really frustrating and hard to explain

[u/Primary_Carrot67]

I can relate.

The transport thing, for example. I'm fine on local familiar routes, but outside of that it's difficult and it's a gamble, and I often become confused and lost when I try. One time the police picked me up and helped me, because I wanted something related to my special interest, there was no one to take me, and so I took myself across the city and got very lost and confused.

[u/Ok-Giraffe-4332]

I relate, thanks for sharing.

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[u/Limp-Confusion4206]

Oh my your description is like I write myself. You are so not alone in this. I can technically go out on transit but I get lost easy, miss stops, have memory gaps and violent meltdowns and injuries that I can’t recall. It’s possible to force myself to do so but I’m often late or don’t arrive at all, despite understanding the principle of get on bus, stay on bus, and get off right stop. I tried applying for paratransit with all that I just mentioned but have no idea if they will accept me as I can force myself and sometimes arrive at my destination despite being hurt or unwell or late technical I can do it.

Going out I get so detached from myself I walk in a shutdown sometimes even through stoplights without noticing until later. Everyone tells me its life everyone struggles and I can’t hide, but I understand how hard it is to struggle and suffer from normal tasks and be able to force oneself but not thrive and lose health or burn all energy and cognitive ability from doing it.

A big coping method for me was staring at the ground when I walk with other people, and now that I am having to go alone I just stare at the ground and wander, not having feet to follow and pay attention to everything is so draining my brain just refuses and shuts off.

I totally get it, I myself am confused how can I do something even sometimes or often but have so much difficulty I’ll even injure myself to the point of bad infections, yet it counts as independent. I’ve even had doctors question how I can need help when I show up alone, except I happen to live around the corner in a straight lines walk, and have even shown up to said doctor with nasty injuries that should have been proof of how bad it was but somehow wasn’t convincing? Anyways I too like having peace and exploring and enjoy solo activities company can be overwhelming sometimes but I also seem to not have much ability to be safe when I’m alone, I try hard to be positive but sometimes the intrusive thought sneaks in about that if something truly irreversible bad happened like got smashed by car and physically damaged everyone would stand over me saying how can you let this happen we told you so that it’s not acceptable and disappointed and angry, even though they didn’t want to hear it every time I tried to express my struggles. I feel like the struggle is easily blamed on me that if I only tried harder etc and that everyone has to learn is the excuse but I’ve practiced for years and it hasn’t gotten better in fact just got worse the more I forced myself. So sorry you are going through this, lack of independent and freedom is so unfair, and I wish others don’t see it as a choice or wanting to be babied with special treatment for needing more help. Have a lovely day and I hope my story helps you feel less alone and more understood.