Toughen up – that phrase makes my arm hairs stand on end… my family members said it a lot, so did my teachers. Stop calling me weak – on one hand I hate being told that. Regardless, coming from my mother it did me good and helped me become the person I am today.
The other one that REALLY gets me is “you’re not trying hard enough”. This is the worst thing you could ever say to someone who is doing there honest best. It’s soul crushing. It doesn’t matter your intentions – I hear “your best is not good enough“.
Certain simple things like timing in conversation trip me up. My brain is working overdrive but still I make simple mistakes. Because I can be extremely skilled at complex tasks people say things like – “you are too smart for this” & “you are not trying hard enough”.
On the inside I am dying because my best is perceived as laziness. I’m working so hard –Not trying? They can not comprehend how difficult this is for me.
People assume I am being rude and I rub them the wrong way. I’ve been told I can be perceived as standoffish and distant – not really what I’m going for. It keeps people away.
I am very isolated because of my limited social skills. My awareness of my social impairments has helped me to develope severe Social Anxiety.
I don’t go out, I don’t socialize – I get more than enough human interaction (the wrong, over stimulating, kind) at work. Other than going to the office, I never go anywhere without my husband. He is my rock and is wonderful to me. He seems to pick up on the things that I miss. We compliment each other nicely.
I don’t bond with many people, but the people who I do bond with have my loyalty till the end. When you can’t read people and tend to be gullible you have to guard your inner circle. I don’t want to let a snake in the hen house.
My co-workers are all wonderful but unfortunately we are never on the same page. They go out, they dance, they drink (a LOT), they get loud and crazy. None of that appeals to me one bit. They care about brands and dinners at expensive restaurants – I feel like these things are a waste of money. I don’t know how to talk to them because we have nothing in common.
My thoughts are on my mortgage, family, my current obsession, and saving for days when I may no longer be able to work. I can’t throw money away like they do – I don’t have money to waste.
The risk of loosing work is high when you have a chronic illness. If you use too many sick days your boss will fire you. I am healthy enough to work right now but I don’t know if this will always be the case.
There was a time years ago when I was sick 3 days a week – the beast. I fear it’s return more than anything.
I am “disabled” but not on any disability. I don’t have supports other than my husband’s care. I’ve been disabled to the point where I really could not live a good life before – it was horrible and I never want to do it again.
If I get sick I will lose my job and my home. More than anything my home is my safe place. Living in apartments was hell with my sensory sensitivities. Maintenance men insisting they have to fix something are not something I can deal with on high sensory days – neither are loud neighbors.
Having my own place is essential to my mental health and having a job is essential to having a home.
I also spend more out of my own pocket for medical expenses than most people. Almost every doctor I need to see is always a specialist who is “out of network”. I don’t get all the recommended medical things done because the costs have gotten ridiculous.
I have to eat organic and gluten free because the chemicals and gluten make my stomach violently ill. I am chemically sensitive – something that is common in people with AS that I speak to.
Money is always tight but we are getting by. I am trying my hardest to keep everything in balance.
All I can do is take care of myself and hope for the best.