Chronic illness and the loss of self identity

Chronic illness and the loss of self

Laura’s Pen shares her story of the loss of self and grief she experienced when she became chronically ill, and how she found herself again…

I recently watched a BBC drama/film ‘The C word’, about a woman called Lisa Lynch who had breast cancer and blogged her way through it with charm, heart-breaking honesty and wit.

I instantly regretted watching it on my own, I cried my eyes out for roughly one hour of the hour and a half. It was Les Misérables all over again, except this time Ivan wasn’t laughing at how violently I was sobbing beside him, body heaving with each cry of anguish, for I had chosen to watch this alone.

Chronic illness and the loss of selfBut this was a bit different. Yes I was crying because the story was sad. Yes that was worse because the story was true. But the worst thing was this: it reminded me far too much of my own life.

There was an element of grief, of loss, far beyond the fear of death itself. For the loss of yourself, who you define yourself as, losing the ability to do the very things that make you… Well… You.

Here’s a secret. I didn’t write this blog post in one go. I usually do, and I end up suffering for up to a week afterwards for it. That’s why I’ve written so few. Writing about something I care about still gives me a rush. But that rush leads to a burst of adrenaline that means I push myself beyond my fatigue, that keeps my brain on-the-ball for longer than I normally can, that makes me forget my pain, if only for a moment.

Sounds good right? It would be, if forgetting myself, forgetting that I have to pace my energy, to keep having rests, to notice the little signs that say “uh-oh” you’re heading for meltdown, didn’t mean several days where I’m so tired that merely standing up makes me feel woozy and unwell like I’d got out of bed in the middle of full-blown flu and decided to go out clubbing.

But my aim now is to do something a little more like that inspirational lady who wrote and laughed through her struggles. Which means I’ve got to be sensible and clock-watch as I write. Stop when the five minute bell rings and continue my thoughts on a new day, with a fresh brain.

This is also how I write my novel, two x 10 minutes of novel writing a day, or one 20 minute burst if it’s a good day. Without the adrenaline that’s all my brain will allow before it packs up for the day and I need to lay down to regain basic function.

It’s hard to describe how this illness affects my brain. But I will try by explaining why I had to give up work.

It was like someone had come along and cut out part of my intelligence while I slept.

 

I used to be a journalist. I wrote for a living (and did a bit of html and website updating on the side). I LOVED it. For the first time in my life I felt like I had figured myself out, I had figured out what it was that made me tick. Yes the job came with a lot of stuff that made me uncomfortable, mainly the very important aspect of talking to new people. But it was worth it. And I’ve never been somebody to shy away from facing a fear.

The illness hit both slowly and suddenly. I know that doesn’t make sense (I rarely do these days). But for probably a year before I knew I was ill something had started to happen, I couldn’t work as fast as I usually did, I found it harder to write, and I was a lot more worn out at the end of the day. If I went to a conference I would be floored by about midday.

Then the sudden hit came. I went from being able to work at about 90% of my normal quality and quantity to about 10%. I literally sat in front of the computer and stared at press releases, reports, things that would normally spark off an idea in about 30 seconds, and struggled to even take in the meaning of the words. My work was terrible. It took me hours and hours to write basic stories, and it would be riddled with mistakes and add nothing new or insightful.

Quote from the Green Mile calledIf anyone spoke even once sentence within about 30 metres of me while I was redrafting or writing I would lose my train of thought entirely. I would turn in stories knowing that the redraft consisted of me staring blindly at my monitor, failing to make sense of my own words let alone improve them, for about an hour. It was like someone had come along and cut out part of my intelligence while I slept.

And then my body started to go to pot. I started walking stiffly and unevenly as though in a lot of pain, although it was actually due to my muscles feeling weak and unstable as though I hadn’t used them for months. I put on a fair bit of weight very quickly. My skin broke out in acne worse than I ever had as a teenager. And this was the breaking point: I started wetting myself. Only slightly, but enough to make me feel ashamed and embarrassed, to soak my knickers but thankfully save my trousers from anything too visible.

It’s hard, once that happens, to feel like the same person you were before. The last day I spent in the office at work, was the first time this happened enough for me to notice. I was stopped by two colleagues as I walked to the toilet, concerned for me for the way I was walking. They told me I should go home, I wasn’t well.

Then I discovered my wet knickers. I tried to soak up the moisture as best I could with tissue, whilst trying but failing to hold back the sobs. I put a sanitary towel, which I luckily had with me, on, walked back to my desk, rung my boss, who was out of the office, sent off my last news story to my colleague, waited for him to return from lunch, and went home on the train crying my eyes out all the way.

If I continue to define myself by what I can’t do, or what normal people do, I will destroy myself.

This was the day I lost everything I once was; I’d lost my passion, my intelligence and my dignity. I walked like I was about 50 years older and was awaiting a hip replacement, I had lost control of my bladder as though I’d had complicated births with several large babies (I’ve had none), and my brain had got up and gone on vacation. And it never even sent me a postcard.

Being chronically ill means having to redefine yourself. I’m glad to say that because I’m no longer working I don’t feel as bad as I did on the last day of work most of the time (but I would no doubt be worse now were I forced to do it again). But all of those problems I went through above are still something I live with every day.

My work, while initially putting a lot of pressure on me when I first got ill, thankfully allowed me to work four hour shifts three times a week from home. I stopped writing, I couldn’t do it anymore. I just sat at home tweaking the website, checking for bugs, moderating the forum at my own slow pace.

Even this was a challenge. I slept until the last possible minute before turning on my computer, I struggled to concentrate the whole way through, and then I would crash for the rest of the day, sleeping until early evening and then attempting to put together something edible without actually cooking.

It was during this time that I managed to cut myself whilst making a sandwich, because it didn’t occur to me that putting my hand in the path of the knife to steady the bread was a bad idea. Luckily it was just a plaster job, although I did manage to get a fair bit of blood on my sandwich. I ate in anyway, I didn’t have the energy to make another. I was eventually made redundant when I was at the point of admitting defeat myself. I couldn’t cope.

And so this became my life. My core beliefs of what made me me were challenged.

I’m a high achiever, so achieving nothing made me a failure.

I’m creative, so creating nothing made me unimaginative, uninteresting.

I was destined for success, I thought, so what is the point of my current existence?

And that’s what it was, for a while, an existence, nothing more. I slept, ate, stared vacantly at the television set, and then repeated.

I had, I’m ashamed to say, defined my worth in part by my looks, so everything that had happened, the plagued skin, the tired eyes, the weight gain, the old comfy clothes and the wet practical knickers, made me feel worthless.

It took a good long while to get past that, to redefine those beliefs. In a big part I have Ivan to thank, for helping me laugh at my failing body and mind, for holding me when the only thing I could manage to do was curl into a ball and cry, and for encouraging me to do those things that gave me back some of that self worth. They key of which was writing again.

I can’t sit in front of a computer all day and reel out pages of text anymore. But the key thing is, I don’t value myself by my inability to do that, I value myself by the fact I am writing a novel.

I will shyly say “I’m trying to write a novel,” or “I’m very slowly writing a novel,” if you ask me about it. But to be honest, I’ve always been one to downplay my achievements before I have achieved them. I would rather people be pleasantly surprised than disappointed.

I’m still aware that other people may question the speed at which I am writing it. But to me, that’s not what’s important. What’s important is that I’m writing it, that if I talk about it my eyes light up and I get excited. I’m doing something I love. If I continue to define myself by what I can’t do, or what normal people do, I will destroy myself.

Now I was doing quite well with this little routine, I would write three times a week until my mind lost focus, which would normally be about half an hour.

Until the pain started. The pain made everything more difficult. I couldn’t sleep properly. I barely left the house anymore. It was a struggle to find the motivation or energy to do anything that gave me self-worth. I had to go through the whole process again.

This time I had the help of a local Cognitive Behavioural Therapy group for chronic pain. They didn’t quite get the fatigue (although they did allow for it). But they did get the pain. They did get how it changes your life and stops you from being what you once were.

That course reminded me that, while I wasn’t defined by my illness, I also had to accept it as part of who I am

The writing was no longer just a mental struggle, although the mental struggle had got a lot worse due to my struggle to sleep. Now my hip hurt if I rested a laptop on my legs. My hip hurt if I sat at a normal table. My elbow and shoulder hurt if I used my breakfast tray for my laptop (and so were unsupported as I wrote).

I pretty much gave it up, other than the occasional attempt to restart, which never really came to much. But that course reminded me that, while I wasn’t defined by my illness, I also had to accept it as part of who I am and be “compassionate to myself”. That meant instead of the internal dialogue that consisted of telling myself I should be able to do that, or how stupid and pointless I was, I had to say “ok, what can I do to make this easier on myself?”

The first thing I realised was how important the writing was for my mental health. It made me feel like I was achieving something, like I had some worth. And it allowed me to hold on to something of what I was before, although within different parameters.

When I started writing again, it changed me. The optimism creeped back in, the laughter started ringing around our house again, I found myself again.

But, I had to get better at pacing and making adjustments to allow this. I mostly write on my iPad now. I occasionally use my laptop to backup my writing, and update my word count (which means I update my word count in chunks that make me realise little and often is actually amounting to something tangible). I use a cushion to support my arm. I set an alarm for my writing. Which means I stop before my brain clunks out.

I am still drained afterwards, I still have to go and lay down for 20 minutes (which is the same length of time I write for), but it means I can still hold a conversation in the evening, that I haven’t “overdone it” and made my brain power worse for the next few days. If it’s a bad day, I will do this in two 10 minute chunks and rest in between, or if its a really bad day, I will allow myself the occasional day off.

And my looks? Well, I managed to lose some of that weight slowly over the course of a year or so. I asked the doctor for some benzoyl peroxide to clear up my skin. I gave in and started using pads in my knickers so that I could forget about my leaky bladder and leave it to it.

None of this makes me feel particularly sexy, but it makes me feel more confident that I can pass for a normal person when out in public. But I have had to let it go to a certain extent.

I mean, putting makeup on to go the shops is a ridiculous notion to me now. It’s pointless wasting energy on it, especially when I wear massive sunglasses that cover about a third of my face outside due to my light sensitivity anyway. Why make a difficult task even harder for the sake of some stranger possibly thinking I look good? And actually, the less I wear it the more confident I become in how I look without it.

Sexy socks
Working those sexy socks

And sometimes my outfit choices are somewhat bizarre. I will wear a nice summer dress with big warm socks (because my feet get cold). Or I will spend all day wearing a jumper inside out or with crumbs all over them. But now that’s part of me. I’m a bit ditzy and a little bit kookie.

But you know what, I’m starting to embrace that as part of my new personality (although I have a feeling Ivan will argue it was always there to begin with).

If I could turn back time and cure myself from day one, I would, I’m not going to kid myself. But I think I would hesitate, because I’ve learnt a lot from this illness. This is going to sound like a greeting card, but I’ve learnt how to find inner strength. I’ve learnt what is most important to me. I’ve learnt to be kinder to myself and to never stop dreaming.

But, saying that, having learnt these lessons, I would be very grateful if this illness could now sod off.

Best of luck to those fighting hidden battles, from Laura (and her virtual pen).

X


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Chronic illness and the loss of self identity

 

Laura Chamberlain

<p>Laura is a writer blogging about living with chronic illness, namely Lyme Disease, Myalgic Encephalomyelitis (ME/CFS) and Fibromylagia. </p>
<p>She likes food, cats, bad jokes. Unfortunately, her boyfriend is allergic to the last two…</p>

24 Comments

  1. Thank you for sharing your thoughts Laura. I relate to much of this, the grief and fear, the loss of self, the lessons learned and of course the wish that all the symptoms go away. Maybe they will one day. Meantime stay strong on the inside and keep looking after yourself as best you know how. xx

    1. Thanks for your comment BabyCrow. I think there’s a lot of hope on the horizon in terms of treatments that could dramatically improve our lives in coming years even if our bodies don’t play ball and improve on their own. All we need to do is hold strong in the mean time, and hope Governments and pharmaceuticals start taking us seriously and actually invest in the research we need. 🙂 x

  2. Wow Laura how brave and honest of you. I’ve had to stop writing my blog now because the pain is crippling sometimes but I have a passion too. My lifeline is an Indian charity that I work with. It is strange how its possible to embrace this illness isn’t it? I fought it for so long but it just wore me out more. Thank you so much for sharing. It’s so important, so inspirational for someone like me who understands, to read something like this. You give me hope thankyou xx

    1. Hi Nickie, thanks for the comments 🙂 I think its so easy when everything becomes so difficult to forget to do something just for yourself, that gives yourself pleasure and makes you feel like you’ve achieved something, but I’ve learned its probably more important than trying and failing to make the flat look tidy, and other less fulfilling tasks 🙂

  3. I have found your story to be inspirational and I thank you for writing it. I have to pace myself. I am an artist and I do what I can and slowly I’m working a little each day towards the goal in my mind. I cover up my work so nobody comments on it and spend a lot of time alone to balance my head. I’ve found a way to be and your story reflected my thought processes.

  4. This is sooo well written. Thank you! I’ve been searching tonight for a bit of online comfort. I struggle so much with feeling like a failure, and am so unbelievably frustrated that I can’t write the way I want. It’s really nice to read the words of someone who I know would understand.

    I have so many half-begun essays that I’ll come across and pick up again and the first couple of paragraphs make sense, and I feel excited about picking up the thread and continuing. Then I read the next paragraph and it’s veered off on some bizarre tangent that I can’t even make hide nor hair of half the time. It’s so weird, seeing the brain drain out onto the page like that. And frustrating, because as you say the adrenaline has flowed from pleasure, and now our bodies are telling us to stop just when we’re feeling most alive.

    Thanks so much again for your honesty, Laura. I’m glad to have found your blog.

    1. Thank you Sue, I’m glad you found it helpful. I still struggle with the blogging for the reasons you describe. I’m trying to get better at writing short posts, unlike this one! I find it easier to continue the flow of something if I do it little and often (partly because reading back in itself takes up energy). I’ve been filling in a benefit form this month so I know it’s going to take me a while to get back into the flow of writing again, but looking forward to having it in my life again! Xx

      1. Hi Laura I came across your blog and I couldn’t believe the symptoms you were describing! You could have been writing a blog on myself! Even down to the exact same pain points! And as for the peeing the knickers incidents, join the club. Every morning I groan n moan my way out of bed, as soon as my feet hit the floor, my bladder must shout, well Hello there she’s awake ha ha. Many a time I can’t make it, so your not alone. I too had to give up my job as every day I felt like I had the flu, plus I could fall asleep on a washing line, it was awful! I knew something was wrong, but just couldn’t put my finger on it, and I looked ok, I didn’t look ill ha ha. I went through a really dark time of not wanting to be here anymore, didn’t want to burden my husband and son with me moaning and whining for what could be the next 30 years, I’m 49 by the way. At the minute I’m existing, I just live day to day. I have a good bunch of people round me though and I think that’s all that matters! I wish you well Laura and thank you for sharing your story with me.
        Kind Regards Janet ❤️

  5. Thank you Laura for this wonderful posting. I could so relate to it but I could never describe those feeling so clearly. Although maybe you think they weren’t clearly at all. 🙂
    I was a Graphic Designer with a home office. I had been ill for a looooooong time but was still functional although at a slower pace. Until one morning I turned on my computer and while Photoshop started up everything went blank. I stared at my screen and had no idea what it was and what the software wanted me to do. It was as you wrote like something took out part of my brain during my sleep.

    And yes I defined myself as a designer. I went to university late in life and was proud on what I achieved. And in the blink of an eye it was gone. It took me years of grieving, the loss of my former life, the feeling of a job well done. I had to relearn all those software programs again. Now I can use them on good days to make memory books, for my daughter, my grandchildren so they know who their Nana and mum was, what her dreams and goals were. But I also make them for me, I’m afraid my memory will one day be wiped again. At least I will have those books to tell me what I once was.:-) But like you in can only do a few minutes here and there.

    Unfortunately I have become bed bound but on good days I can use my wheelchair. I’m grateful for my electronic gadgets, my iPad is my window to the world and holds all my thoughts and sob stories. 🙂

    Thanks again for putting into words what a lot of us feel.

    Christine

  6. Thank you for this post! So well written and true. I can’t wait to read your novel one day soon – that was always my closet dream but my trouble with the ability to edit it, all that time on the computer and needing your brain to work! I’m only just learning about pacing so maybe I’ll get back to it when my babies are older 🙂 looking forward to your other posts x

  7. Thankyou for this; it definitely resonates. Feeling very down today, frustrated with my limitations, and turning to the internet for solace, found your blog. It really does help to know that I’m not the only one.

  8. Ty for putting the words together I could not, to share how I feel. It is a good way to understand what I’m going through. And I’m not alone in this, loss of self. I can now start to work out the me of today, not yesterday. I have had fibromyalgia, as long as I can remember, now it has a name. And I can be me, in a new way, yay.

  9. Laura, this is so beautifully put. It’s my life too. What was. What it now is. Such stark differences. Whilst the loss of self and grief for what was and what could have been, have been hard, i too now love myself and the important things in my life, with more depth. I have a contentment that i had not know in my old life. I was always striving. Now I’m grateful for a great cup of tea and a chat with my best friend. I write too and it gives me purpose and a sense of self in all this bleakness. Keep doing you. Crazy fuzzy socks and crumbs on your sweater. Thank you for this post. All my love and best wishes to you. Kate x

  10. It seems to me that there’s something particularly cruel about getting worse from the excitement of writing. I get this as well. I don’t think it’s the physical activity of writing, it’s the adrenaline surge of feeling like you have something to say. With brainfog I also feel like I’m going to forget an 💡 if I don’t write it down quickly. I admire you being able to keep a novel in your mind while writing in such short bursts. I also have a novel planned, and I think about it when I can’t do anything else, but I’ve given up on writing it until I have more stamina.

    1. Unfortunately the novel writing hasn’t been going quite so well lately! Although I’ve been blogging more so I’ve prob just traded it off. You’re definitely right though that if I’m writing about something that makes me passionate that adrenaline completely does me in. It’s why I’ve given myself these rules: no twitter arguments, no responding to the dark underbelly that is the comments section of the internet (except on here of course!), and no getting super angry about politics (easier said than done). If I’m going to do myself in due to adrenaline it’s got to be doing something I love.

      I have gone off on a few political rants in the book though… guess that still needs an outlet 😂 but at least I can’t argue with anyone about it there! I hope we both find more stamina for our books x

      1. Yes I’ve been losing energy to these types of things recently. Requires a lot of discipline!

  11. Hi I couldn’t find an email to email you directly but I hope this reaches you. I am a fellow Fibro and M.E. survivor for the past 7 years. I have found a small amount of relief with acupuncture and supplements combined with Gabapentin for the hypersensitivity. I recently read a book called the Medical Medium by Anthony (forgot his last name). You can find it on Amazon . His theory is that M.E. is basically Epstein Barr that never goes away and that the tests needed for this will not be invented for years. He offers a natural way to rid your body. The book has a large spiritual side so you will know if the book is for you after the first chapter. I have not tried the method yet, but it somehow resonates as true with me. Just thought I would pass it along and you can look at it. Gentle and virtual hugs!

  12. Just wanted to say thank you for sharing- I could relate to so much of this… it helped me feel less alone and a little less crazy. I’m currently struggling to re-find myself or my new self as it were, and I was losing hope. This has really helped.

    1. I’m glad to hear this Danni but sorry to hear you’ve been struggling. Are you part of any support groups on Facebook? For me, that helped me with the loneliness and coming to feel part of a community x

  13. Thank you for this article. I am sorry for your suffering. I can relate very well. Thanks for including a positive, loving message. I find it hard to do that for myself. Something to work at. You really inspired me! Angie

    1. Thank you Angie. It definitely isn’t always easy and it certainly takes practice. I hope things get easier x

  14. Hello Laura,
    Thanks for your post, it zipped into my email today.
    I have just returned from two hours at work to tie up loose ends and say goodbye for a while.
    Again.
    You speak of grief and loss of self and I’ll add the lonely walk out of the building, the drive home and the grateful dive back onto my bed. Here I am again. How long will I be be bed bound this time round?

    A few things that work for me: leaving Facebook. Shutting down the constant noise that Facebook had become. Cleaning up instagram so that I can use it travel while I lie on my bed. Surrendering to the fact that I am not able to get up and not able to leave home. That means asking friends to shop and drop off food. Staring the whole disability thing all over again.

    Feeling sad.
    Pleased I’m not alone out there

  15. Like looking at myself in a mirror… I’ve read lots of other similarly-themed blogs, etc., about this, but your post FEELS the most like me. Even the comments from all your readers… Thank you for sharing–ALL of you–you have said what I cannot, without bursting into a pool of tears. Though sad, it’s so nice to know there are those who actually understand. Blessings on all of you!

  16. Hi Laura
    Thank you for sharing. I too suffer from fybromyalgia and spondlatrophaty, sporatic arthritis. It’s a road filled with thorns. Thankfull my husband is sympathetic and helps so so much. Sadly our friends don’t accept my illness. It hurts when they say it’s all in your HEAD., pull yourself together. I had to stop working in 2016 as my muscles started contacting and my toes would curl under and right arm shaking. Had a extremely busy day Saturday and yes I will be ever so low and slow for the next 3 days. As I write my hands are shaking. In my heart I promise my self what I would do the next day ….just to realise I don’t have the energy. So happy I found your post.
    I too overdo on a good day , for that moment I push on until I sadly have to admit I have set myself back again. Need to learn to pace myself. To all of us , may we be blessed with a better and beautiful day.

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