Sunday, 12 January 2014

A dreaded question- "What do you do?"

There are times when you meet people that you have never met before or perhaps people that you have not seen in a while and they ask you "So what is it you do?" A question that can truly make you feel quite uncomfortable. It is often the case that when you do face this type of question you are 'at your best' and by that I mean able to handle being in company or out of the house and dressed. Not welded to your bed, in your pyjamas and greasy hair. In other words, to use the spoonie definition 'you don't look sick.' Meaning it's perfectly acceptable that someone would ask what it is you do. In fairness it's a sign of the enquirer's interest, and therefore is a form of compliment. It's a question all of us have most probably asked in the bid to get to know someone.

But how do you go about answering this question? Saying that yo do nothing, that you are unemployed, for me can be hard to admit. I feel like shouting out "but it' not through choice!" That being unable to work makes you feel stunted, like you have lost a part of your identity and that you would like to be earning a living. Because you have been so successful and know what it means to work hard, admitting that you do nothing can feel shaming and difficult to admit to yourself. It's a long way from where you had planned and worked hard for your life to go. Life can be so expensive nowadays, having a job is a major security blanket to know that you can afford to keep a roof over your head and food on the table etc. The phrase 'work to live' has moved away from being about affording holidays and socialising to being able to pay the bills. Therefore we are now in an era where if you don't work or are not desperately seeking employment it can seem uncomprehensible to many. Then add to that the fact that at that moment of being asked what you do, you don't look asthough you're suffering from a chronic illness, because you've been able to get dressed and be in company, it can seem even more uncomprehensible why you do nothing.

Of course, what they don't see is the effect that time spent having been social can have on many sufferers. The after effects or post exertion malaise to give it it's proper title (have to respect the PEM, or else it can make your life a living hell) can take a few days to manifest or happen directly afterwards. It can also vary in the amount of time it will last. The less PEM you get the better, even after something you usually suffer for, as it can mean that your stamina and tolerance levels are improving. However usually after a social gathering (again where you're likely to face these types of questions) even if you're just sitting and talking it can take it's toll. Therefore further impeeding your ability to work as you have no structure, your body cannot recover overnight. What you could do on one day, doesn't mean that you can do it the next, which causes confusion for others and utter frustration for sufferers. Making it more complex to explain that you don't do anything and sometimes causing sweaty palms and an inability to form a coherant sentence, let alone a good answer.

Perhaps a better question would be "what do you enjoy doing?" I have seen this argument somewhere but cannot for the life of me remember where I saw it. The jist of the argument however was that you learn more about people by aking what they like to do rather than what they do. Afterall how many peole love their jobs? For many people it's a far cry from what they trained in, but the reality is it's needed to keep a roof over their heads and to run a car for example. I always considered myself priveledged to love my chosen career. I don't think that you can work in theatre without loving it, as it becomes such an integral part of your life. Travelling around and long hours. I know so many people that suffer from ME that had similar attitudes to their jobs. So maybe this is another reason I find it difficult when facing that question. I am used to being somewhat defined by my career and many of my biggest achievements are career related. Believe me many of the sufferer's that I know are a far cry from that awful stereotype of being on benefits because they don't want to work. We would love to work if we could. Some people are still clinging on to jobs as best they can. However in general it could be said that you'd find out more about someone by asking about their hobbies and interests, no matter their situation. Much like on the gameshow Pointless where contestants are asked what job they do and then what their interests are. Finding out how a person likes to spend their free time can reveal a lot more about them. But how likely is it that all of a sudden we will all start asking this? Perhaps it's something that we can implement ourselves when we meet new people.

But how do you answer "what do you do?" when you can't work due to chronic illness? Even pursuing hobbies can prove difficult. I'd supply an answer but I'm not sure I have one. Anyone care to give one?  There is no point in lying and making up a job, incase of further questions, the enquirer could even work in that field, and what if you saw them again? The thing is, although you want to point out that you don't work at the moment, there can be a fine line between trying to explain so people don't get the wrong idea (ie you don't want to work) or making the enquirer uncomfortable by speaking too much about your condition and having them not knowing how to respond.

I guess I could say that I'm a blogger, raising awareness about an illness called ME. Afterall that is the truth. I don't consider it my 'job' but it is something that I am committed to and enjoy writing. Perhaps this is the answer I shall give in future. From there it can then either develop into a discussion about ME or not, without getting to personal and uncomfortable. As I said in my yearly review post Goodbye 2013, writing this blog has been such a positive step. I've enjoyed helping others, which is something that I always enjoyed about working in stage management. More than that though, I have enjoyed getting to know other people in similar situations and relishing the support and laughs they give. It's given me back some of that proactiveness of working. So maybe it is a good answer to give.

What answers do you give when asked what you do?


  1. I dread this question so much, when doctors ask me I feel like they are judging me and thinking 'your m.e can't be that bad she must be a hypochondriac' I rarely feel like doctors respond in a sensitive and empathetic way, which is sad. I normally answer it with 'I suffer with M.E quite severly so I spend most of the day in bed or resting, I do what I can but I do struggle, I wish I could work but at the moment my body just wouldn't cope with it' anyway, as long as we keep spreading awareness through blogging one day in the future we should hit a breakthrough! xx

    1. hey sian, and hayley, i wanted to say, first and foremost, that i am truly sorry about your illnesses, and hope that you keep fighting until it is beaten.

      i am currently working on a documentary regarding similar illnesses, and was hoping you would consider sharing it with others, if you think it is noteworthy, so that it may eventually find its way in the lap of some one who can contribute to the indiegogo campaign. if you decide to blog about it, let me know, and i will be happy to post a link to your site from our site, in the credits, to thank you for spreading the word.

      the site for the documentary is:

      i hope this helps you or some one you know in the future. thanks, and, good luck!

    2. Hi,
      In what way would you like for us to spread the word? Sorry my brain is quite foggy today. I will have a look at the website hopefully tomorrow.
      Thank you for your well wishes

  2. Hmm, it's a tricky one... if I were you, I'd say something like: 'Well, theatre is my line of work but unfortunately I've had to take some time out because of health problems. So at the moment I'm focussing on my writing instead.' That's three things for them to take up if they want, depending on if they're brave enough to ask about your health or just want to focus on the writing or theatre work. And it tells them a lot about you too.

  3. Sorry everyone, not sure why my comments aren't coming through at the moment but thank you for your thoughts. I think that for now to say blogging is my 'job' suits and there is a lot of opportunity to expand it further, when I am at better stages of health. At the moment I'm not in a position to be asked it a lot but perhaps by the time I can be more social I will have a good text book answer.
    Thanks again for commenting and for reading.