If you live with any long term condition, you expend a disproportionate amount of additional energy trying to keep up. Whether it's planning and management of normal, daily activities (like commuting and work), reflecting on how other people react to you or whatever, the average person like me (or other different people) probably spends around four hours plus using up additional mental energy managing situations or even reminding themselves of normal social behaviour that "normal" people just don't use. It is exhausting. I'll shout out here too to my friends who are exhausted living and trying to manage their conditions and are lucky if they can manage normal activities, like dressing. I have periods like this from time to time and it is a shitty, shitty state of being, let me tell you.
Do you have to consider access situations, availability of toilets when considering going out to the pub, cinema or theatre? The train? Whether or not it will be loud and bright or the numbers of people there? Do you spend hours trying to calm yourself down because someone has discriminated against you, made some unfeeling comments or you know you did something off and are beating yourself up about it? No? Then you're not using up additional energy.
What is probably worse about this whole thing, is that many of us are frustrated. For people on the autistic spectrum, only about 15% of us are in full time employment. If you are lucky, you're somewhere with an understanding employer and robust HR. I know from friends' stories that this sometimes isn't the case. Most people in employment with a long term condition will speak to you about the constant extended effort to keep up - or to go above and beyond - to "prove" you, the disabled person, belong somewhere. I live with a constant worry over my sick leave. Using additional energy means that you experience more stress (and I suffer extreme stress already). This has a knock on effect on emotional health and your immune system. As I have a couple of conditions that I can wake up with having something go click in a bad way, I perpetually worry about if I will be OK tomorrow. Occupational Health and I discussed a year ago if I should drop down to 30 hours a week on these grounds, but most employers aren't really keen on that. Plus one is dealing with misconceptions and discrimination all the time. It is.... frustrating.
I do also feel a sense of frustrated potential. I am not a stupid person, however I have had to recognise that I have limits. I am trying to put my foot down and stop myself from over-extending myself. That is very frustrating. During my twenties and thirties, at the time I was studying for my two degrees, I had my mental health take a nose-dive. On top of this, I had some long term physical complaints kick off as well. Throw in some particularly stressful family events for good measure. I passed both my degrees. Possibly, I could have done better. Frankly, I'm amazed I managed to pass at all sometimes. The rest of the time, I feel like I was psychologically, emotionally and continually treading water, in perpetual motion, all the time. All of which, you guessed it, uses up energy. Life, for me, feels like an uphill battle all the time. Work and all that goes with it, is exhausting. Trying to deal with my ongoing health issues takes up a lot of energy. I have rediscovered my fire with politics, which is good. But I am also constantly angry about the uphill battles we different people face every single day from the second we open our eyes. Bear in mind a lot of us are also challenging misconceptions every day too. Guess what? Tiring.
I saw a video recently, that likens the autistic daily experience to putting in everything you got into the performance of a lifetime. Every day. I think that's probably a good analogy for us, as well as other with difference.
Careerwise, there's lots I would have liked to do. I would like to have become a journalist and I still hold out hope of being a writer, dyslexia and everything else be damned. There are other things I would like to have considered too. However a lot of this requires a CV that has exceptional volunteer and community experience, as well as a top-notch degree. I just didn't have the energy beyond keeping my head above water. And that is how it was and how it is. I have come to terms with that. I probably would have done some things differently and I do try not to dwell on a lot of this too much. Academically, a late diagnosis of dyslexia also didn't help (with an English degree).
That is what I mean by Failure to Launch: the missed opportunities, the chances missed, the having to turn things down because otherwise I'll spread myself too thin and have to deal with the consequences. Learning to accept that has been a challenge in itself.
However, I also remind myself that I am capable of picking myself up in difficult times and starting over. That, despite everything, every day, I am still here and that, in itself, is an achievement. I own my own home, I have a career of sorts. I say I'm winning.
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