Published on 12, July, 2020
Hi, I'm new to the community. I've not tried talking online and I do feel a little anxious but I'm hoping this will be a safe space for me and I'll be understood.
I live with my family but they don't believe in autism and see it more as an excuse and force me to talk and do things that trigger me and cause anxiety. I was diagnosed a few years ago had to go through it all on my own my family didn't want me to do it and said I wasted NHS money and time. I'm having to mask all the time every day and it's tiring me out and I get burn out. I've literally no one to turn to and no one who understands me and what I'm going through.
I've noticed that my autism is getting worse, the things that affect me I mean. Is that common? I don't know much about it. I get eye sensitivity. I'm sensitive to lots like sounds and touch but my eyes and brightness are affected really bad. Everything is so bright, I wear sunglasses a lot now even inside because of my eyes. I can only use my phone and laptop for about 10-15 minutes before my eyes start hurting before it becomes too much for me. Usually the result is me feeling tired, dizzy and my eyes feel like they are strained.
Digestion is my other issue. My stomach hurts, get feelings like trapped wind a lot like there's lots of movement in it, very uncomfortable and things can be 'loose'. I do have IBS and anxiety so it's probably linked with this but I do struggle with it and feel it's worsening.
And last other than struggling with being social is anxiety. I have anxiety and it affects me each and every day but weirdly it doesn't have a trigger, or if it does I've no idea what it is. I'm anxious all the time for some reason and it causes a lot of physical and mental effects but nothing seems to improve it and I no idea what causes me to feel so anxious. My doctor keeps suggesting medication but I know side effects are common and I don't want them so I say no.
Just feeling alone at the moment.
Very alone.
Hi Summer,
I'm sorry you are experiencing this- you are not alone- I actually also feel like 'my autism is getting worse' at the moment. Things that I used to cope with seem overwhelming at the moment- For example I have recently moved back to the city where I used study and I used to have no problem walking accross the market and through the crowds- now I was on the verge of a panick attack and just couldn't cope. Same with other things- I also really struggle with digestion and I think you are right about anxiety making it worse. At the moment I am incapable of eating socially at all which I used to be able to do. I don't know. Maybe it's because over time we became worn out so that we are now less resilient and less able to deal with all these stressful and difficult situations?
I'm so sorry your family is taking this view about autism- It must be so difficult. My dad takes a similar view- he thinks that 'autism is an excuse' and he said I was ruining my life by allowing myself to be a bit more mindful about how much social things I make myself engage with. Luckily I do not have that much contact with my father so I can choose to not mention being autistic to him anymore. It's still hard though.
Sending you lots of strength and solidarity. Best, Ann