Wednesday, 15 January 2014

"What do you do?" The Sequel

In my last post I wrote about a discomfort when confronted with the question "what do you do?"  The post had some great response, even featured in 2 online magazines. Many fellow spoonies agreed that they too hated the question but I also got an interesting response from a former class mate. They spoke about how the temporary contract nature of being employed in the theatre meant that they often found themselves at a loss for words when people ask what they do. Or what they are working on at the moment. I guess it all goes to show that we do place a lot of emphasis on a need to do something or be something.

Just writing that last sentence made me think about the oh so many talent and reality programmes where the contestants proclaim that they "want to be somebody." Well, guess what? You already are somebody. We can never realy be anyone else, we can try, but truly we'll only ever be ourselves. And what is so wrong with that? By all means work on being the best version of yourself that you can be and follow your goals and ambitions but in doing so it doesn't have to mean that you are acknowledged as somebody or become somebody else.

In a similar vein, to be somebody or to be recognized as somebody does not need to be reliant on what we do. Would you rather your epitaph read 'reality star' or 'loving friend'? Therefore being defined or known more for our personalities and character rather than our curriculum vitae's. Surely this is something most of us want and yet we mostly ask what people do.

I admit that this is something that I have struggled with up to as recently as last year. When I became ill I genuinely feared not being able to do anything and by do I mean the things that I had formerly considered of note such as making a living and living independantly. To combat this, I planned parties, made decorations, baked cakes for people, helped raise money for charity, all to have something to do. Something that I could say to myself as much as to others that I could still contribute something. You will notice that the list of things that I did and considered as new jobs, (possibly starting small businesses) all involved a form of giving and doing something for others. I guess that this is a form of wanting to still feel needed in a way. To still be present, when you feel you have been rudely pushed out of society by illness. Making yourself valuable to others by doing something for them. That although you have a chronic illness you still want to hold your place in society. I'm not saying that I did these things more to be recognised, they were done with genuine intent and an effort to focus on the things that I still could do rather than what I couldn't do. And to help me come to terms with the social effects that chronic illness had on my life.

Then of course my ME got worse and I developed Fibromyalgia as well and these things also became out of reach. Doing things for others became improbable as there was now even less that I could do for myself and became heavily reliant on others doing more for me for the simplest things like helping me to walk downstairs and clean my teeth. I, by proxy lost the title of the 'go to' person when you needed something done, well lost it even more, and actually learnt some harsh realities about friendship in the process. I thought that another consequence and one that I desperately feared was to become depressed. That by not having something to do and not being able to do as much for others (things that have always been major parts of my work ethic and personality) that I would lose more of myself and all those old voices of being useless and no good would come flooding back in. But they haven't. In fact, I'd say that my mental strength might be better than it's ever been (actually that has just been tested by something that just happened and my lack of reaction). For someone that used to be their own worst enemy that is high praise. I've recently cut my anti-depressants by half the dosage (doctor supervised obviously) and apart from one day when I shook for a short time I've coped really well. I expected a rough ride, after having done so in the past, but one month down the line and I'm feeling good. Well mentally and emotionally anyway, haha.

I guess in some ways I have characterized the saying "actions speak louder than words" but when actions become limited words are your closest tools. Through words I have found that I can still help others and do them a good deed. For example, by writing this blog I am utilising words to raise awareness and helping others with chronic illnesses feel less alone. And simply by offering kind words to anyone that needs them whether they are suffering from  a chronic condition or not. Talk might be cheap but some well meant words can make someones day. So I have found a way of satisfying that part of my character but by not doing so much and not at too much expense to my own health.

As I said I'm not doing these things to be vilified by others, I never have, but I do think that over the last year especially I have become even less disquietend by what others think of me. Having the guts to go out in a wheelchair and being seen as 'vulnerable' or 'not who you were' will do that to you. But there is definitely a sense of wanting to be meritted more for my personality and who I am rather than what I do. Perhaps that is a strange statement, of course I have always wanted people to like me for me but I realise that so much of my personality has previously been tied up with the things that I do and do for others. Of course then you are vulnerable to people that are more interested in what you can do for them. For now though, it's about what I can do that is of not too much expense to myself. I can still be me, still laugh and joke and help others if I can, and realizing this has only made me stronger. Illness may change some of the things that I can do but it doesn't have to change me. Or if it does change me then let it change me for the better. To be that best version of myself.

So finding out what I do or do not do is only part of the enigma (ha ha) that is me. Same goes for everyone. Of course this blog post is not going to change social convention and stop people asking what others do. I will probably even find myself asking it myself at some stage. However I hope that it's made you readers appreciate more the various things that people are regardless of what they do and that includes yourselves.  We shouldn't be defined or categorized in this way, but for the merits we have as individuals. If you happen to love what you do too, then what a blessing.

For me, who knows what the future may bring, going back to stage management or theatre or seeing where my writing goes. After this experience, to be in a position to work again will be a blessing. Having the health to work is underrated. But no matter what I do I just want to keep focusing on being the best version of me possible and to savour all the things that I can still do, rather than what I can't do, despite chronic illness.


  1. Hi Sian,

    Some quick questions about your dealings with CFS when you have a chance. Please email me at mtrucillo(at)recallcenter(dot)com. Thank you!!


  2. What you (we!) are 'doing' is working towards recovery from ME. This involves a lot of determined lying down, vigorous resting, dedicated energy- conservation, assertive apparent laziness, courageous no-saying - and learning to allow others the privilege of being the givers.

  3. Sorry it's took a while to reply, I've not been getting any notifications through. This is a great answer. Thank you for the comment, I will take this on board.