Published on 12, July, 2020
Hi, so I’m 26 and was diagnosed as autistic several years ago.
I’ve always felt pretty isolated. I feel different and don’t fit in anywhere unless I pretend to be another person, even then I struggle to maintain that for long.
I hate my life and I know that sounds a bit dramatic but I do. I am incredibly fortunate in the sense that I am currently financially stable but I don’t feel fulfilled by my life.
At the moment I work 15 hours in a work placement as well as look after a pony for a few days a week too. I see my parents on a Sunday for a few hours. I don’t really have much in terms of support from my family. Both my parents are seriously ill and my step dad is my mums full time carer.
I feel pathetic saying that I am unhappy because the fact is I have things in my life that I should be pleased about but the reality feels completely different.
I wake in the morning exhausted from a sleep filled with nightmares and racing thoughts. I eat my breakfast and get dressed whilst trying to fight off the belief that I am disgusting and obese. I cant stop myself from thinking constantly about every potential scenario of the day and really struggle to not be in control.
At work I am drained by all the social interaction and because I am constantly suppressing weird, stupid tics and things. When I’ve finished work I come home and I feel overwhelmed by all the household chores, bills, laundry, gardening and cooking. All I want to do is sleep. Then I am alone. I look out my window and feel even more different and even more isolated. I don’t really have any friends and the ones I do, have their own lives and are busy.
I moved into independent accommodation in June and since then I have been trying desperately to pretend that I’m managing better than I feel I am. I can go days where I don’t physically speak to anyone at all, crying on and off all day, to suddenly being invited over to someone’s house and I’m so grateful for their company that I almost feel sick and I don’t want to leave even though I am exhausted, so when I do, it breaks me. I sob on my way home and hate myself for being pathetic.
I started self harming again and when that didn’t help I started drinking to help how I feel. I was hiding how much I was drinking and making it sound like a joke when I was hungover.
I thought I could manage living independently, have a job and just do everything that being an adult entails but I don’t feel like I can. I stopped asking for help and thought if I just pretended like I was managing then I would.
Ive been offered a permanent job where I am working and I was massively excited. I thought it would be the answer to how I feel but in reality the position would mean working shifts with no pattern and to me this feels massive.
I think what I’m trying to somehow ask is, is there anyone else like this? Is this all just because I’m autistic?
At the moment I don’t know who I am and I’m scared that come January when my work placement finishes I’ll be left even more isolated and feeling even worse about myself. I tried to tell someone today that I’m worried about this but she said I was thinking too far ahead but to me it feels as immediate as the coming weekend.
I’m not sure what else to say, sorry. I think I would just like someone to say I’m not alone.
Welcome to the forum.
There is nothing that you've written about that you need to apologise for. You will find at least one or two people here who share each experience that you described, and many of us will identify with a great deal of them, even including self-harm and alcohol abuse (I'm a functioning alcoholic). To the people here, nothing that you have said is weird, pathetic, disgusting, or stupid; they are consequences either of being autistic, or of depression caused by your sense of isolation and struggle to cope. The people here are incredibly understanding, and very generous with their support. You do not have to pretend here, your requests for help will be listened to without judgement, and no-one will criticise you for writing as much or as little as you feel you need to.
You are not alone.
It sounds to me as if you are experiencing what we call "burn out", and very likely depression, too. Your sense that there is more going on than you can handle is probably correct, but for an autistic person, this is nothing to be ashamed of, just one of the unfortunate consequences of living in a world that wasn't made with the needs of autistic people in mind, which is not your fault. Pretending to be someone that we are not, so that we can conceal our autism from other people ("passing" or "masking"), is extremely hard work, and does often lead to the feeling that we're not quite sure who we are any more.
The first piece of advice that I would give you is not to suppress your autistic urges at least when you are alone. Those things are coping mechanisms that our autistic brains instinctively use to relieve the stress that we build up when we're out in the world. Trying to suppress them when it isn't necessary only adds to the stress, and lets it build up day after day until the urge to self-harm or self-medicate becomes irresistible. If looking after the pony is something that you enjoy, allow yourself to get really immersed in it, concentrate intensely on every action while you're grooming, and every tiny reaction from the pony. And if you need to cry, it is nothing to be ashamed of, so cry.
I think it would also be wise to try to see your GP to ask for some help with depression. I know that this is easier said than done. It may help to write down some of the things that you have told us, or even some of the advice that you receive, to take with you, as this might make communicating with the doctor easier and less stressful.
I hope you find the support of the forum as beneficial as I have since my diagnosis.
Best wishes.
Thank you. It is very kind of you to reply. Your advice to not suppress my autistic urges when I’m alone has been helpful and I’ve been allowing my to do so.
I’ve gone back to ‘managing’ after a brief episode of trying to get someone to help. It didn’t work and all I did was make them unhappy. I feel like this will be a never ending cycle now of ‘coping’, reaching breaking point, trying to seek help, feeling guilty and then going back to ‘coping’.
Hello, thank you for replying, yes I do ride my pony but if I am honest looking after him is massively stressful to me even though I love him so much. His owner is a bit chaotic. Always changing things, always asking me to look after him on my days off at last minute and never looking after him well enough meaning I have to plan ahead for the pony every week.
I suppose I do judge myself by comparing to other people. I have a friend (the only one I physically see because the other two are in different parts of the world) who I really like but I feel upset when I look at her life and see that’s shes got a good job that she’s amazing at, a child, a boyfriend, an enourmous number of friends that she can see and she’s always busy doing things and generally never being alone. I don’t know anyone who is autistic and I just feel upset that I can’t be like my friend. I want to have a career, a flat and meet someone that could be my boyfriend but I can’t.
Thank you Sunflower for your reply. In a way it was good to hear that other people also have the same cycle of coping and breaking. It’s so disheartening that it happens and that other people (who are supposed to be professionals) are surprised when you appear to suddenly explode with all the pain you’ve been feeling. I’m really sorry you’ve had to do this your whole life so far, it must be so exhausting but the fact you’ve kept going is amazing. Hopefully your diagnosis will help. When I was diagnosed, I was offered the six post diagnosis appointment to discuss my autism. All that happened when I asked if she could give me an insight into what about me was autistic and how I can manage better, because I didn’t know anything about autism at that point, was that she said I’d managed pretty well up to that point and she didn’t feel I needed any guidance. I ended up having only two of the appointments (the second one consisted of her asking me over and over if I wanted a needs assessment from the council which I refused).
There aren’t many provisions or groups where I live anyway, and as I’m geographically isolated as well so it makes travelling to groups on the mainland too stressful for me.
Also. Thank you for the positive picture thing you posted as well. I like it very much.
I'd also take the advice to go see your GP and saying how you really feel.
I was thinking: you've got this pony, don't know if you ride it? But if you do, that is a great way to meet people too. It all takes a lot of time to find some people that you can relate to.
And the feeling of loneliness does subside over the years, at least in my case. I know that doesn't help now, but everyone is alone really. I used to keep myself busy all the time, doing this and that course and trying not to think about it too much.
Some of us here sometimes visit meeting especially for people with ASD. Maybe that could help you too.
AND last but not least: you've only recently moved. Do you know how much time it takes for an autistic person to adjust to something big like that??? It took me just about two years!
Don't be too hard on yourself and as someone here told you: allow yourself to be yourself when you're alone.
By the way: a pet does help too ️
Many of us are familiar with the cycle you describe, pretending to cope, reaching breaking point, struggling through somehow, then back to pretending to cope. I've been doing it all my life and I'm 58 now. You're right about how exhausting it is. I've only just got my diagnosis (on Friday) so trying to live my life more authentically as an autistic person is totally new to me.
The psychologist I saw on Friday gave me some diagrams of basic principles to live by - avoiding over exerting myself, recognising stress factors and trying to limit them, keeping myself safe if I have a meltdown. She also gave me some Alis Rowe cartoons and quotes. Do you find anything like this useful? Because of the heavy demands that are made on us it's incredibly common to experience anxiety and depression which makes us feel worse about everything. Do let your GP know how bad you feel there is nothing at all to be guilty or shamed of.
It's really hard because lots of people don't understand how hard it is even to do simple, basic things. I haven't got showered or dressed today, washed up, or gone outside the house. My little dog is poorly and I've just cuddled her all day. It has done both of us a lot of good to shut out the world. I can talk to myself and not feel inhibited about any of my strange quirks.
There are many people in this online community who have gained lots of insight through struggling with things in their lives. It's really good that you are able to explain so clearly what is going on for you at the moment and reach out to them. I know they will try and help you like they have helped me. You have got lots of challenges in your life at the moment and you are being very courageous in difficult circumstances.
It is hard not to keep measuring yourself against other people but it really is different for us. No amount of willpower can change the fact that we have to use more energy to do things. I really wish I had realised that at your age. I completely understand the thinking ahead thing, I do it all the time as a way of trying to reduce the stress of uncertainty. You are surrounded by people here who know how tough it is and are full of support for you now and in the future.
I do hope things get easier for you soon.