Guest blog: Who am I?: Defining yourself when you have ME

Source: Ryan Rivera on Flickr

This is a guest blog for M.E. awareness month by Anna Wood, a severe ME veteran of 8 years and physics education researcher. Anna writes about how work defines our identity and how not being able to work due to M.E. affects this.

How many times do conversations with strangers end up being about what job you do? My hairdresser asked me recently if today was my day off and even the decorator, recognising that I don’t have a Scottish accent, wondered if I had moved to Glasgow for work.

I am housebound with severe-ish ME. What should I say to these questions? What would you say?

One of the side-effects of chronic illness, and of ME in particular is the effect it can have on your identity. If you thought about it pre-illness (and lets face it, most of don’t/didn’t think about it when we were well), we would have been clear who we were. Most people define themselves by what they spend the majority of their day doing. If you work, then you think of yourself as, say, a solicitor, or a digger driver. If you look after your children you think of yourself as a mother or father, if you are at school or university you think of yourself as a student.

But when we get ill that changes – often we can no longer do the things that we thought defined us.

Yet we are constantly being asked about our identity – even twitter requires you to write a short biography about yourself. So if I can no longer work – who am I now? Some people say that we shouldn’t be defined by what we do, that we are also someone’s daughter, or son, sister or brother, someone’s friend or lover. I am some of these – I’m a sister, a daughter, a friend and a wife.  But I don’t want to be defined simply in relation to others (in part because I’m only rarely able to actively engage in these relationships). But for me, it is also important for identity to be about defining who I am simply for myself. I think that what we do does define us, but that doesn’t need to be a negative thing, even for someone with a chronic illness.

One thing I have learned is that identity is fluid. It changes with the time of day, with the week, with the season. Of course this happens for healthy people too. An engineer comes home to her family and is now a wife, or a mother. But with chronic illness these shifts are even more pronounced.

For example, in a relapse I focus on myself, I try to see myself compassionately as someone who is sick and needs looking after. This changes my identity. Rather than seeing myself as a ‘sick person’ with a chronic illness, I become a carer – of myself.  In fact is has been shown that it is helpful for people with ME to view their illness as their job. I agree with this.  Focussing on what you need and who you are is not a failing, or a sign of weakness. It is acknowledging how things are in this moment.

When I’m in a better phase I’m able to do research in collaboration with Edinburgh University. Then I see myself as an academic, though in reality, even on good days I spend much more time not doing research as doing it.  But still, it gives me a different identity, and I value that.

None of this really helps with answering those ‘so what do you do then ?’ type questions.  I still dread them. Sometimes I bend the truth, saying ‘I now work from home doing research’. Other times I dodge the question simply saying ‘oh yes I was working at the university’, then change the subject.

But this week, for ME awareness I will make sure that I give the unvarnished truth. I shall say it as it is – ‘I was working and then I became ill with ME, and now I’m pretty much housebound.’ I will take the opportunity to mention it because these opportunities are so rare and because many people do not know what effect ME can have, or how severe it can be.  I hope that this will help, in some small way to raise awareness of this devastating illness, and I hope that if you get the opportunity, you will do too.

Over to you: How do you define yourself? How did you decide what to put on your twitter profile? You can leave a comment in the comments section below.

I’m Anna Wood, a severe ME veteran of 8 years and physics education researcher. I blog (mostly about science education) at http://learningfrome-learning.blogspot.com and can be found on twitter @annakwood