Source: Getting On With Aspergers
Last year I wrote a piece on mental health and my personal experience in being diagnosed with Asperger syndrome. The response to Getting This Far was incredible, it made me realise that mental health has an impact on so many lives and actually talking about it can really help other people.
The build up to and eventual diagnosis of any mental illness is one thing but what is it actually like living with it on a daily basis? Firstly, at times it can be so much more difficult for the people who live with someone who suffers from a mental illness than the person themselves. These people are emotionally involved, the first line of defence, the exhausted crutch to lean on and they have to put up with the almighty whirlwind of irrational fear and sometimes bizarre quirks of someone they love.
How can you help someone who’s emotional state is so up and down that it’s hard to keep up with? With great difficulty, patience and a level of tolerance that you would only give a puppy who hasn’t worked out that the toilet is outside.
I can only speak from my experience with depression and more recently Asperger’s but I have found that not every day is a struggle. I can go full weeks and feel absolutely fine, I may have a few little quirks along the way but nothing that damages me enough from functioning properly. Then you have the bad days, sometimes they are just a day, others considerably longer. On these days everything is a problem, everyone is annoying, nothing is amusing and the smallest thing can send you over the edge.
I think it is important to focus on the bad times here because the good days or weeks should be left as that, why over think feeling happy, just enjoy it. The difficult days are what needs addressing and ways of coping with them to try and make them as rare as possible.
It’s easy to spot a bad day a mile off, you don’t want to see anyone, it is extremely difficult to get out of bed and the majority of the day will be spent lying in the dark in silence because even the TV would piss you off today. Crippling self-doubt and anxiety take over to the point where even a simple task is never getting done. If you have plans on one of these days whether that be work, shopping or just a trip out, sadly they are now a write-off it’s just not going to happen.
The danger is that a good day can become bad because of the smallest thing, a last minute change of routine, somebody saying the wrong thing, not being able to achieve something that you wanted to, can really cause distress. Basically anything that you see as even slightly negative can send you on that downward spiral.
With the condition once your mind has been made up it isn’t going to change, “I can’t do that now” is a pretty common response to even the smallest uncertainty or change. Keeping someone who is in that state of mind busy is really important to try and prevent a very low few days. A task far easier said than done but a busy mind hasn’t got time to feel anything other than busy.
The unknown is huge for me, I hate It. If I haven’t been someone before I will have to research the place, plan things down to tiny detail in my mind just to be able to consider trying it. Partly due to other people, they are unpredictable and it can be difficult to read their intentions. You have a pretty constant feeling of being judged and it always seems to be negative rather than positive assumptions. Not caring what other people think would be nice but it would be a lie to say it didn’t bother me.
It is often said that talking about how your feeling is helpful and I couldn’t agree more, if the time is right. If you’re having a good few days, the last thing you feel like doing is talking about negative things that could bring your mood down. What I have found useful is explaining to family that if I want to talk about things I will come to you, it means I need to get it out at whatever time it may be day or night so please be there to just listen. I know family and friends sometimes worry about saying the wrong thing, I don’t expect them to have the right answers they aren’t professionals, they are there to talk to if you need to vent and that is so important.
Some of the quirks that come with the condition I’ve found to be quite amusing, a bloody pain to live with for others I’m sure but still pretty funny. Taking things extremely literally for example. “Can you wash the pots please?” Seems like a straight forward request, right? You’d think but I take that instruction so literally that I’ll wash the pots but leave the cutlery in the sink… In my defence at no point did anyone mention a knife and fork! To many this might sound like I’m just a smart arse being awkward. I can promise you this is not the case; it wouldn’t even enter my head to wash the cutlery even whilst washing dishes. I can’t explain it, it’s weird and annoying for everyone else but if you ask me to do the washing up, the whole lot will get done. Odd I know but it’s all in the wording.
On a similar footing to the literal theme is honesty… I’m a firm believer in say what you mean and mean what you say. Now I know why. Its beyond confusing when someone lies, even a white one. I have no grasp on it, why would you deliberately mislead someone? I take that kind of thing really personally, is it something I’ve done that’s made them lie to me, stuff like that. It’s paranoia really, everything is personal and everything is taken to heart. So I’d suggest to anyone who talks to someone with Asperger’s try and be as honest as possible or at least don’t get caught out. I can smell a lie like a fart in a lift.
Joking aside learning how to communicate efficiently is more important than you would think, it saves so much time and confusion. For example, “Adam do you want to do the hoovering tomorrow?” No, no I don’t. “Will you do the hoovering for me tomorrow?” Yes, I will. The honesty thing works both ways, ask me a question and you’re going to get the truth. So be prepared. “Does my bum look big in this” for example… let’s just not go down that road.
I have made light of some of the issues that I deal with, I think that’s important though. Your whole existence can’t be a serious one, it would be exhausting. It is vital to realise that each individual with any mental illness still has a personality, they can take a joke and have a laugh. People don’t need to tread on eggshells around you. Six days out of seven they can be just as ‘normal’ as anybody else. Thank god my friends see it that way, I’m in line for just as much stick as anyone else and it is all good fun.
What I’m trying to say is, your life can pretty normal and from the outside it might even seem like everything is fine. Which makes for a decent social life. Of course the difficult spells come and you withdraw from social situations for a while. Once again it is your family who have to see those low times because they are always around to pick up the pieces.
The most important facts that I am still trying to accept is that this won’t go away. At this moment in time it does negatively affect my life in terms of work, independence and fulfilment. What it doesn’t affect is who I am as a person, my personality and the ability to have a pretty normal social life. The funny thing is, before I was diagnosed it did affect those things, not knowing what was wrong really brought me into my shell. So there is hope that the other more important aspects of my life can be fixed with the right guidance and continued support.
Good Luck and if anyone has any questions or queries please get in touch.