You may have noticed I haven’t posted in a while. I want to explain why, and it goes to an issue that has been all too current in the media in the past couple of months: The importance of caring for the carer.

Carers of highly dependent people are often expected to fit a very particular mold: That of a person who is tireless, highly capable, and selfless. In being all those things, it then makes sense that we are meant to be silent too, since we are not the most important people in our own lives and we spend most of everyday dedicated to someone else’s well-being. When we do speak up we are meant to only talk of the person we care for and their needs.

By gaspi *yg, via Flickr

In the world I experience, I see carers treated like shadows of the person they care for; the dependent person must always come first. The problem is, the longer you live in someone else’s shadow – at their beck and call and existing largely in relation to them and their needs – the more you become a mere shadow of yourself too. Your own mental, physical and emotional well-being can become strained in the way anyone’s can, but because we have dependents we can’t just sleep at night or go on a holiday to recharge. There is no end of the tunnel when you know your child (for example) will eventually be old enough to care for themselves. You can’t take the milestones of starting school or moving out of home as guidelines for when you’ll get to rediscover and care for yourself; it’s like you’re on hold, indefinitely.

I’ve been lucky, of sorts, in that my autistic son has moved from being so violent, non-verbal, and very limited in his social and physical skills, to being the increasingly competent (and amazingly complex) child I have today. (Though it’s hard to call that “luck” when so many years of effort from him and I went into the transition, still I think there is some “luck” to the matter because I know full well that many families do the same as we have (and more) but don’t get the outcomes we have had. There are no prognosis promises in the autism world.)

So now that I (and him) have come so far that I’m no longer in such an intense minute-to-minute carer role, I find myself suffering what feels like a highly indulgent crisis of self. I look back over everything that has happened and changed since my son’s initial autism diagnosis, and I feel like I completely lost myself along the way. I feel like I’m walking in the shoes of someone else, because they don’t fit me anymore. I seem to have lost the ability to experience joy in personal self-directed activities such as art and computer games and even just the prestige of holding a job.

It’s not that I’m depressed per se, rather that I don’t know who I am anymore or even what I want to be. I keep adding tasks and roles to my life in the hope one of them will feel right and make me feel fulfilled, and conversely letting go of various other commitments in the thought that maybe they’re what’s making me feel so misdirected, but it’s not working so far. Ultimately I keep coming back to growing my knowledge about and dedication to my sons (and to autism), because that is something I know has given me purpose and is useful still, but how much of that is still just me living through and in shadows, how much of that is just hiding from whatever is causing this sense of loss and confusion?

I think part of this picture is my diagnosis at the start of the year of Irritable Bowel Syndrome (IBS). My IBS was caused by a few too many bouts of severe gastroenteritis late last year. At the risk of giving you too much information, I was living with daily and at times explosive diarrhea (even severe tummy pain), for months after the gastro, until the diagnosis of IBS and accompanying major diet changes settled my digestive system down to something closer to normal (though I still take two pills each day to help regulate and control my symptoms). Whenever I deviate from the highly restrictive diet I am on, my symptoms return. There are not many foods I can now eat, and those I do give me little pleasure. The foods I can eat that I like, have to be had in small amounts, few and far between. I have lost much weight, and people say how much healthier I look now because of that weight loss, but it’s been miserable.

One of the reasons I think my IBS is quite key to my current crisis of self, is because I spent many of the past years telling myself one day my husband and I could again indulge in eating out at fine restaurants which we so used to enjoy together, and maybe we could even travel and go overseas one day – that we could spend time together as a couple doing these enjoyable things once the high dependence of our children was more under control. That was one of my lights at the end of the tunnel, and with my son’s improvements with his autism, it finally seemed possible. But it’s too late now; there are some foods and meals I will never experience at all, and travelling or eating out have become complex (or even impossible) tasks because of my current state of health and dietary restrictions. All those times I refused to get in babysitters or to accept respite care or to put my son through the stress of holidays – all because I considered it to be in his best interests – and now the chances to do those things I hoped to return to, are gone.

It sounds so petty though, doesn’t it? Some people are fed through tubes, and some can’t even afford fine restaurant food, and some have diabetes or other conditions causing life-long dietary restrictions, and here I am complaining about my newly arrived IBS. I keep telling myself to harden up, get over it, but there are only so many years you can keep telling yourself to harden up about so many things, before you realise you’re constantly beating yourself up and telling yourself to shut up. I have become my own strongest critic and silencer and I feel paralysed by myself worse than anyone else who could have tied to control my thoughts and words. The IBS issue is just the latest thing I keep telling myself to “deal with.” Just like I told myself to get over and deal with my loss of my barely-begun career as a lecturer, when I quit to dedicate every waking moment to my autistic son; there’s no one to blame but me, but it still feels like a deep personal failure and I’m so tired of losing things I once cared about and telling myself to just deal with it.

And so that’s where I am now. Trying to figure out a way to re-take my honesty and my voice – and more essentially, my very self – because along the way I lost sight of who I am. I am more proud of who I have become since autism (and of course, my sons) entered my life, but I am so very confused on what I am meant to do with that person now. I don’t know how to reconcile who I was with who I am, and I feel like those around me don’t see or understand that split. My values and ideals and desires for life and for the world, are in conflict right now, and I feel in flux. Because of that flux, I also feel extraordinarily vulnerable and sensitive to others’ views; like an exposed empty shell because I’m having trouble filling it up with what I supposedly am and what I want while those around me are trying to tell me what they want me to be and who they think I am. (If you’re having trouble following what I’m saying, imagine how confused it is inside my head right now!)

Because of all this self-doubt and confusion, I have been turning down fantastic opportunities lately, such as a chance to talk on National Radio recently about disability issues, and then I beat myself up for saying no to those opportunities. It’s like opportunity knocks and I inform it to come back when I know who I am, but we all know that Opportunity is rarely that obliging. I even recently quit a job I’ve had for almost a decade, even though we need the money, because I’m just so misplaced; I suspect I will greatly regret that in time too, but for now I think it’s something I had to do. I think.

So yes, I’m quiet of late, because I’m lost, and blogging is something that requires strength and certainty which I lack right now. Please be patient though, I’m sure I’ll find my self soon, and when I do, it will be the best self I can be, and maybe I’ll have finally learnt my lesson about the importance of caring: no matter how much I love my children, I can not do best by them if I am unwell in these ways – part of loving them, is remembering to love myself. “Self” is not a dirty word.

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24 Responses to Self

  1. Hilary Stace says:

    I do love your blog and the topic often seems something that I am grappling with myself. Just as this one does, coming out just when am in the middle of writing an academic article about the complexities of disability care, particularly the (sometimes publicly demeaned) role of mothers of disabled children.

    • Thank you Hilary, and I would love you to share a link or reference to your article when it’s complete, it sounds like a very important piece.

      • Hilary says:

        If it’s accepted won’t be till next year.

        Re the gut issues,though, I heard a really interesting talk by Mike Taylor a few weeks ago. He is a microbiologist associated with the University of Auckland Autism research project you discussed a few posts ago. His whole research area is gut microbiota, autism and other neurological disorders. He is interested in having people with and without autism in his study. I asked him about the ethics and was reassured that it is all pretty robust. So it might be worth contacting him through the Minder4minds network (that is what they are calling themselves now).

  2. Joanne says:

    I cannot even begin to imagine how you must be feeling. What you have written is incredibly honest, raw and real, and as always, your writing is incredibly inspiring and educational. I truly hope that as you search for your new sense of self that you find joy, hope and inspiration. I hope that you find a new reservoir of strength and sense of direction. I only wish I could be there with you to help you through the dark patches. We could both go looking for new truths about ourselves together, as I too am going through a (much smaller) “loss of self” with the challenges in my life.

    Loves and hugs from the other side of the world.

    • Thank you Joanne, you know I love you too and hope one day we can meet and ponder the meaning of everything together… or just sit in the garden enjoying the sunshine together; both sound equally blissful 🙂 Wishing you the best xxx

  3. Angela says:

    Stay well-This is a “journey” not a “race.”
    I have the quote below pinned above my desk. Maybe you should too?
    “We must be reminded that there are times when the needs of the caregiver are more important than the needs of the child. We must consider the caregiver’s need for refuelling-for care, nurturance and support-To counteract the insidious myth that mothers are an endless source of love and emotional sustenance”

  4. The greatest way to teach our children to love, discover, and be themselves is to show them how it’s done! Take all the time you need, and enjoy the newness that comes with letting go of the old.

    I really do still miss smoking cigarettes and riding the Toronto transit all day in search of random used book stores while flirting with strangers. These are things I will never again do, and will likely always miss. But they are things that I was also lucky enough to have done!

    There are many challenges in transition. I think we all recognize the feeling you describe of searching for self. As parents, I think it’s maybe even more important that we put this need up front and center! Thank-you for sharing with such honesty.

    You are strong and beautiful!


  5. nostromoswife says:

    Wow so much of your article could’ve been written by me (except not half as well I suspect!). I’ve also spent the last few years constantly getting over things – big things and petty things such as the fact that we can’t hang pictures on the wall because they get ripped off or possessions that get wrecked. My values have changed hugely during this time – and at times it’s not been a comfortable change especially when everyone else stays pretty much the same. I applaud your honesty about your life and your opinions – it’s somehow comforting to know there are other mums that feel the way I do, I’m not the only one feeling lost. I agree with you about taking care of yourself first – it can be so tough at times so we need to be ready for when those tough times hit. We also have to BE tough to cope with all the challenges and oughtisms of life as a carer. Take care, I really hope you keep blogging – but only if it serves you 🙂

    • Thank you nostromoswife, I’m not ready to walk away from blogging just yet but I do appreciate the support and encouragement. And in the same way that you find it helpful to know there are others going through the same that you are, I find it just as reassuring and comforting to hear from Mums like you who feel the same as I do. Thank you so much for commenting and letting me know I am not alone in this 🙂

  6. Kathy R. says:

    I don’t even know what to type here except YES, YES, WHAT YOU SAID. And YES!! And how immensely comforting to know that I am not alone. We who spend so much of our energy on parenting can get so lost… even though if I could go back, I wouldn’t change a thing. Thank you for putting your thoughts about something so personal out there for strangers like me to ponder.

  7. Mark kent says:

    hello. i get your blog. I HAVE aspergers and M.E. lot health problems. ,married 13 years .we have 3 children. 2,boys and1,girl. our youngest son age 10 all so has aspergers.i can not work.but i do take part in a lot lot research from universities.i have results.i have met in person..utta frith…, speaking too her for 45 mins. if you would like to e.mail me chat pleasedo.. e.mail mark

    Date: Wed, 16 Oct 2013 01:30:11 +0000 To:

  8. It is not petty, at all. I understand these feelings and have been working on a post along similar lines. Take care.

  9. Take the time you need.

  10. Judy Waterhouse says:

    You have been my guide ever since I discovered your blog, around the same time as I began working as a kiwi teacher in a school specifically set up for students with ASD in Brisbane. Your hopes and wishes for your son was the voice in my head everyday I was at school.

    Burn out got me. That aside my advice would be to get hold of a copy of The Artist’s Way by Julia Cameron. At first I procrastinated and huffed and puffed about the tasks she sets, but now I get it and feel this warmth creeping back into my soul.

    You write a thought provoking blog and never seem to shy away from the issues but now it’s time to sit back a little and let others around take care of you.

    Remember, on a plane you are instructed to put on your oxygen mast first before attending to others.

    • Great analogy Judy.

      Thank you for your very kind words about my blog, that feedback really does mean a lot to me, and I’m so glad my blog has helped you. Your comment has helped me too; it’s nice when the helping and care can go both ways 🙂

  11. PalmerstonNorthMum says:

    Wow, you just described me. I am also trying to find, or hang on, to myself in the midst of having two children with special needs. Thank you for sharing, I soon understand and good to know I’m not alone.

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