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

Advertisements

10 thoughts on “Guest blog: Who am I?: Defining yourself when you have ME

  1. Hi Anna. A great blog post. I can totally relate to this. I also dread the question, and have a rehearsed answer now, as I used to feel so put on the spot and just being asked can make me feel so small and like a failure, just because I’m no longer in paid work. Now that I’m well enough to do some writing as voluntary work, I have something to say and I feel much more human again! I can answer “what do you do?” with “I write for a national health charity” even if I only manage a bit of writing here and there. The online pharmacy community has been very welcoming and encouraging, and carving my own niche in this way has really helped rebuild my confidence and sense of contributing to society. I don’t mention that it’s voluntary work, as I think that devalues it to some people and it’s no less of an identity because it’s unpaid work. Thanks again for a great blog post, Anna.

    Like

  2. Thanks Emily. Really interesting that, like me you don’t mention ME in your twitter profile. Not that there is anything wrong with doing so- many people do. But is says something about how we see ourselves, or perhaps how we want the world to see us anyway!

    Liked by 1 person

    • It’s a shame that society judges us so much on what we do. I’m very lucky to have recovered enough to moderate M.E. to be able to do some low energy hobbies again and that has made a huge difference to how I feel about myself. I used to have it in my Twitter profile until very recently, with how many years I’ve had M.E. & fibromyalgia respectively but decided that linking to Action for M.E. in it is enough to say I have M.E. and I wanted to put my hobbies and interests in, as they should be the things that define me, not my M.E.!

      Like

  3. A good post.
    At the hairdressers – Yes that I used to always dread that “Is it your day off question”. Doesn’t apply so much now since I’ve only managed to get to a hairdressers once in the last 4 years . . . !
    But it is a big issue I do struggle with even though I hardly see anyone. I do like the idea that the challenge of trying to get more well is a job in itself. And with ME/CFS it really is for sure. We have to do it all by ourselves.
    But it is still awkward when somebody who doesn’t know you asks the “what do you do ?” question.
    But I guess I’ll think about that more when I’m a bit more well and actually see other people.
    Meantime I think I will consider updating my Twitter bio so that it doesn’t read so much about ME.
    Thank you for this post. It has given me some things to think about.
    Best wishes meantime
    To both Anna and Emily
    Anne Dean

    Liked by 1 person

  4. Great post! I really relate to this! I used to dread The Question also, and then my husband and I adopted a baby. All of a sudden, The Question almost went away, because the easy answer to “what do you do?” was “I am a stay-at-home mom.” Occasionally someone would ask me what I did BEFORE that. Now my daughter is 12, we have no other children, and if I were healthy I’d be working again, so the question is more relevant once more. We now live in a small town, and that has affected the way I handle these questions. It is better just to explain the situation when I meet someone new, if I am asked or if the situation warrants it, because chances are I am going to see that person again!

    I have also thought a lot about issues of identity. My educational/vocational plan was to become a psychologist, and I got CFS/ME when I was in graduate school. The identity “psychologist” is one I never got to wear. I try to think of my identity as composed of many different layers of relationships and activities that have meaning to me. My twitter profile says, in part, “Christian, writer, mother, wife, spoonie. ME/CFS for 25 years. Lover of books, singing, and poodles.” I added the “ME/CFS” part to attract followers with our illness, but now that I think about it, I guess it is one component of my identity. I’ve had it for a little more than half of my life. Like it or not, I’m a different person than I would have been without this illness.

    Last year, I hit both the big five-oh AND the 25-year mark of being ill. I wrote a guest post on my husband’s blog about it, about how in many ways I feel like a different person than the healthy young graduate student I was right before ME struck. I wondered if my 25-year-old self could magically see me as I am now, how shocked and dismayed would she be to see that my life is so different than she had planned? (I thought about including a link to that blog, but then I realized that might not be proper netiquette, without being invited to do so by the poster of this article.)

    OK, this comment has become WAY too long. You got me started, Anna! Again, great post!

    Liked by 1 person

  5. Before I became ill with M.E. almost 20 years ago I was a mother of five and a registered childminder. Full of energy. I also studied with the O.U. obviously everything changed. Im now a grandparent and try to help when im well enough. I find the question What do you do? Difficult as many people have still never heard of M.E.
    I enjoyed reading this blogg. Thank you.
    Jayne

    Liked by 1 person

  6. Thanks to your blog Anna, I realised that I don’t dread THAT question as much as I used to do…. I guess it gets better (at least this does….!) with age and the duration of you having ME: I am 59 now and ill for 39 years. So most people know by now I’m to ill to work. Being 59 years old I also could have stopped working by now, like my spouse.
    I agree with Randi that, being ill for so long defines you (partly?) as a person, it changes you, because having and surviving/coping with ME is indeed a fulltime job, Anne! And it changes your life completely, but not completely for the worse…. I would gladly be healthy again, but not go back to the life I had once. Would you?

    Liked by 1 person

  7. Just tonight I’ve been in tears about feeling I was nothing anymore, that I did nothing and feel useless. I have always defined myself by my work & independence. ME has taken this away from me. My Twitter profile defines me as a gardener, but I’m unable to grow as much as I used to, because that’s been taken away. I dread anyone asking me what I do when I do manage to get out. I do nothing. But of course that is not true, you are right, I am a carer of myself. Thanks for your post – I came across it at just the right time. Tears gone.

    Like

Please leave a comment:

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s