Coping with anxiety every single day

I have recently been diagnosed with autism and I am in my 40s. I have suffered from anxiety all of my life and before I knew about the autism, I have had several courses of cognitive behavioural therapy (CBT). This has helped me with my social anxiety which is now not as bad as it used to be.

However, every since I was a child I have suffered from anxiety. It is worse in the morning when I often wake up feeling sick with anxiety. As I go through the day it does get better. Sometimes I feel very low levels of anxiety and at other times I can be extremely anxious for weeks at a time. I am often worrying about something that is going to happen later that day or even in a few weeks' time - for example a meeting I have to do, people I have to talk to, somewhere unfamiliar that I am going or just general uncertainty about what is going to happen next in my life.

I would really appreciate hearing from anyone who feels the same as I feel that I am quite alone. I have a job and a partner but the anxiety makes me very tired a lot of time time and it is difficult to live with. Does anyone have any good tips on how to manage chronic anxiety? 

People around me don't understand why I get so anxious. They are supportive but I think they probably can't imagine how I actually feel and what a burden it is to feel anxious a lot of the time. It takes the enjoyment out of life. The times that I feel less anxious are when I am with people I know doing something planned or familiar. For example, I love going to the cinema and I always feel great when I watch films. 

Any advice would be gratefully received. Thank you.

  • Hi Andrew as someone who has recently been diagnosed with general anxiety disorder I would like to share a few things with you.

    I have decided that anxiety is part of life. Some people are more prone to it than others. I'm trying hard not to get frustrated or more anxious when I can feel my anxiety levels build. This is difficult but I think being aware of it is the first step.

    I'm not sure what I would do about your trip. If it's going to make a difference on how much I enjoy the trip, maybe talk to the organiser of the trip. Maybe explain that I might sleep better if I was away from the more social areas. Or that I'd like the quieter room (well a holiday is about relaxing as well as catching up with friends). Maybe I would ask about the room so I know in advance then it's not so much of a surprise when I get there. If I am not going to be in a quiet area I can put plans in place to minimise anxiety. . Sometimes I think "What would X do?" I find people are often a lot more forward than me and will come out and say something no big deal. You might find it might not be a big deal to them in the end.

    As for doing things you enjoy to help with anxiety. I do this too (walking, music, crochet, decorating, gardening) but feel that it's a temporary distraction. I found CBT didn't help but that might have been the session leaders. This is where more anxiety has then come in as I have had "realisations" about anxiety. I won't go into this here as I don't want to set anyone off on the extra thoughts I have had recently!! I take St John's Wort every noe and then to take the edge off. I find yoga helps with the physical aspects. I find identidying triggers helps and knowing when to expect them. I find that thinking about past experiences and how they panned out helps (I think this has been a conscious decision in the past few years).

    I do have neverending thoughts though (I have identified these as to be both positive and negative). I can liken it to a hamster going round on a wheel then just as it jumps off, another one hops on and keeps it going, sometimes there might be 2 or 3 hamsters on the wheel. That's when it gets difficult.  I have tried to do some research on ruminating thoughts and ASC but haven't found anything concrete other than anecdotes on other forums.

    I think I am the same. I need to socialise but on my terms otherwise it causes me anxiety. And I need alone time. It's a double-bind - I see my friends, we have fun, but then I come home and complain about them to my other half. I have single friends dotted about and one group of 3 other friends - we meet up once or twice a year. I only see one of the group more often because I feel comfortable with her on my own. For the other two, I love them dearly (and I know they feel the same) but don't feel comfortable to be with them on a 1:1 as I feel I would run out of things to say quite quickly. In a group I can hide and join in when I want to. I do find it hard sometimes to keep up especially if the topic changes or, know when to come in, then I've forgotten what I want to say, sometimes I will say things out of context or just "not right" then the conversation falters. Sometimes I'm aware of when people are sort of, "greasing the wheels" and I feel like they are being insincere for the sake of getting along and being a part of the group.

    At the end of the day as I am getting older I am thinking more and more "I am in my thirties now and can do what I want to". That is what other people I know do and they just get on with their lives instead of thinking all the time about it.  Easier said than done!

  • Since writing the original post I have been trying to work on my anxiety. I am not sure that I have made massive progress but every little step helps I guess. One of the things I have learnt is not to be so hard on myself. I have always had anxiety since being a small child - I will always have to deal with some level of anxiety so I am trying to accept that. Accepting it helps a little bit.

    Next weekend I am going on holiday with a group of friends that I used to live with when I left university. I haven't spent time with them since 2003 although I have seen then every year or two. I am quite worried as we are going to a place that I have never been before and all I can think about is that I would like to know that I will have a good bedroom which is away from any social areas in the villa and have my own bathroom. Then I tell myself that I am being ridiculous - but it is already causing me considerable anxiety.

    My friends do not know about the autism diagnosis and I am wondering whether to say something in advance about the room situation. I know that I am going to stress about it all week but I don't want to appear to be a diva. I feel that if I knew I had a good room I would feel more secure about the holiday.

    Any advice on this predicament?

    As for the anxiety, I am trying to do more things that I enjoy. For example, I always feel less anxious when I go for a walk - preferably in nature. It doesn't make the anxiety go away completely but it does help. I am also trying to write down what my fears are so that I can actually plan strategies to deal with them. I have also realised that I need quite a bit of time on my own each week to rest and just recharge my batteries. If I am with people all the time, I become extremely tired and moody.

    I think I am realising that the autism diagnosis is actually becoming more and more of a factor in my life - i.e. I can see now how I have faced so many difficulties in the past and have a) not asked others for help and b) not known what was going on in my head. Now that I have an explanation for a lot of it, I can try to find ways to deal with different situations. It is quite a battle though.

    My main challenge in life is that if I spend too much time on my own I feel down and depressed, but if I spend too much time with people I feel exhausted and moody. I don't think there is a prefect answer to this but I guess I just have to see how I feel each day and try to adapt. Does anyone have any tips for dealing with how much time to spend with other people? 

  • Andrew I can relate as I have experience of your predicament. It sounds like you have Generalised Anxiety Disorder - the daily anxiety in your stomach first thing in the morning is a dead giveaway symptom. SSRI anti-depressants will do nothing for this as they don't act on the appropriate receptors in the brain to alleviate anxiety. Whatever your doctor tells you about CBT/SSRIs, neither will work for the chronic anxiety you suffer.

    Look onto Pregabalin or Gabapentin - the former is also known as Lyrica. It is approved for GAD relief and your doctor will issue it if you describe your symptoms and explain that your SSRIs do not work to relieve anxiety. There are some side effects but they will disappear after first few weeks - fatigue, balance issues and memory recall problems. The upside? Your GAD will be gone within 24 hours - yes they are that good. Over time they become less effective but overall the reduction is permanent resolution of GAD. You can take them alongside your SSRI's to keep depression at bay.

    Good luck my friend.

  • When you are worrying about things, do you find you are planning multiple scenarios and possible outcomes?

    Yes - cos it stops you worrying so much once you work out what you'll do if X happens. 

  • Thank you Tom. Your advice helps me to understand my son's anxiety too. As a non autistic mom, I always have trouble to understand the difficulties my son experiences. I just found this web site an hour ago and joined. And I am surprised to find out how helpful people's advice here. Your advice is exactly what I wanted to learn. Thanks. Helen

  • Thank you so much for everyone who responded. It is probably the first time in my life that I have heard anyone say that they totally understand how I feel about my anxiety. It is a bit of a relief and I wonder if part of what I need to do is to accept that anxiety is part of me? I will also keep working on trying to manage it effectively. I do take antidepressants and have done so for a long time. They don't do much for my anxiety but they do prevent my mood from spiralling down into a very deep place. 

    The other thing I am realising more and more is that I am working very hard when I am with other people - which causes me to have extreme tiredness. I have to try and get the balance right as I do enjoy being with others and need to for my work but I also like a lot of time on my own.

    Thanks again everyone! 

  • Hi Andrew, I am new here and am awaiting what I hope will be the final part of my autism assessment next week.  I am mid 40s and I think our experiences sound very similar.  I am married and have two children, my wife is wonderful in helping me understand my situation, and helping me to deal with others. 

    No matter how good a mood I am in when I go to bed, I wake up with the same feelings of anxiety, emptiness and worry that fortunately do seem to improve as the day goes on (or more probably when there is less of the day left to make it through).  If I have a particular worry this is much more acute, and takes precedence over everything else, is always there with me and is something I cannot shut off from.  On the odd occasions that I speak to people about my worries, I do generally feel better afterwards, but again this is short lived.  I don't take anything for anxiety, and in the past have been prescribed anti-depressants (though wonder now whether I had real depression, or whether it was something autism linked?).  I have never had a problem coming off these, and usually after a few months of going through a horrendous few weeks as they "got into my system", then a period of stability, I have decided to come off them, and done so with no problems, just one day I take them, next day I stop.

    Having a partner you can talk to is fantastic and a great step in managing the feelings you have, though sometimes there are things that sound too weird to talk about.  I manage to mask a lot of this at work, but am exhausted when I come home, and take the mask off.  When you are worrying about things, do you find you are planning multiple scenarios and possible outcomes?

  • Greetings! From someone else who also has official "chronic anxiety", yet in my case it is well founded and proved by actual experience (hence my UserName).

    This may not be helpful, or may seem bad, but this is how I myself deal with it - sort of...

    I usually imagine and plan for the Absolute WORST. In that way, I am either slightly prepared, or it can only be better than was imagined...!

    Things which cause anxiety are not (to be) ignored; they are considered deeply and are planned against. Things may not go according to thought or planning, but the main thing is that they are Expected. And, as I say, this is probably bad (...) but it is better than having lots of "unpleasant unexpected surprises".

    That is all from me, I think. (& Have a nice day!)

  • I forgot to say that I take medication for my anxiety and have done for the past 14 years. It is a very low dose anti-depressant but I find it helps take the edge of my anxiety so I can function. I have tried coming off it a number of times but then the anxiety increases again. 

  • I am 40 and undergoing assessment for ASD at the moment. I have suffered from anxiety all my life. I have had lots of different courses of talking therapy including CBT but it doesn't seem to help me very much. I have a husband, two children and a career and on the outside no-one would know there is anything "wrong". I am constantly exhausted. It is very tiring to be anxious all the time. I don't really like films or the cinema but I do enjoy reading and I enjoy watching very familiar things that I have seen over and over again. 

  • I agree with Martian Tom about anxiety being the default condition. I work very hard to disguise my anxiety but it is very tiring doing so.

    Have a look at the Anxiety UK website:
    https://www.anxietyuk.org.uk/

  • Hi Andrew,

    I was diagnosed 3 years ago, aged 56.  I identify with you all the way.  Anxiety is my default condition.  It never really goes away - though I find I can manage it now much better than I used to.  I think it's because I've learned so much, and can behave in a way that doesn't draw attention to my difference.  From my teens through to my forties, though, I was consciously aware of being 'odd' without knowing why.  That's bound to make anyone anxious.

    I tried CBT, too, and learned something from it.  But just understanding that my feelings may have false premises doesn't necessarily assuage those feelings.  I still wake up feeling that something bad is going to happen to me.  I still worry - in spite of a lifetime of surviving crises and realising that my fears are without foundation - that it's all going to come crashing down around my ears.  I can even jump in the car in the morning to head off to work and find myself thinking 'Supposing the thing breaks down on the way?  What will I do?  How will I cope?'

    Like you, too, I find any kind of narrative to be relaxing.  A story, say.  But as I find it difficult to read for long periods of time, my 'go-to' is the movies.  I can switch on a movie and get immersed in the lives of the characters, and for those couple of hours I'm out of my life and into someone else's. 

    People in general - NTs - don't 'get' autistic anxiety.  I get people saying to me 'That's not autism - everyone gets anxious.'  Yes.  But it's not on the same level.  With me, it's like a permanent culture shock.  Each new day - even in familiar surroundings with familiar people - is a challenge.  In some ways, I think we have to accept that people will never completely 'get' us, and will always think we're just being hyper-sensitive.  Which, in many ways, we are.  But we can't help it.

    You aren't alone!

    Take care,

    Tom