Saturday, 18 May 2013

Who Am I?... 24601

(Yes, I watched my new Les Miserables DVD this week, and there were tears. What of it?)

(I'd say I'm sorry, but I'm not. It made me chuckle too much.)

I’ve been thinking recently about the concept of feeling guilty in response to your being ill, and how to combat it (if you can).

First off I think is to not feel silly or at fault for feeling guilty. I actually think it’s incredibly easy to fall into the guilt “trap” if you will. By not being healthy you are in a position where you have to rely on others to compensate for the limitations in your independence, and inevitably that will sometimes be inconvenient for them. I don’t think you’d be human if some form of guilt or regret didn’t cross your mind in such a scenario.

The problem with this oh so easily succumbed to situation is that it isn't in the slightest bit a healthy one. The only healthy or productive form of guilt is in response to something you've done wrong , and I mean productive only in the sense that it can compel you to make amends. In the sense of falling ill, continuing to be ill and being without a cure, there is no misdemeanor for which to atone. None of us asked to be the way we are – in a lot of cases, medical experts don’t even know why we are the way we are. Call it what you will – a poor toss of the dice of fate, cosmic tasteless humour or any other variation – there is simply no wrong-doing involved.

In short, the feelings of guilt are not productive, helpful or healthy.

When you combine them with the other common feelings provoked by long term ill health; anger and powerlessness being the two that spring most easily to mind, it makes for a very toxic brew indeed.

So what do we do?

A GP I was directed to who had an interest in chronic pain conditions described the road to acceptance as a somewhat truncated version of the grief process. Stage one is disbelief and shock, which I think we have all probably felt at some point although for me I think the blow was cushioned by the diagnosis process taking some two years. It’s hard to be shocked by an answer you’ve been wishing to find for all that time.
The next stage is anger.

I say this to illustrate and reassure others that it’s a completely normal part of the process. It’s entirely unremarkable to flail about and be full of rage at what your body is doing to you, to feel betrayed by the vessel you live within upon finding it to be flawed. I think this is particularly prevalent in a disease which you develop rather than were born with – your body worked fine before, why should it suddenly without rhyme or reason just stop doing so?

For me, the beginning of the end of the anger phase came at the moment I realised my anger wasn't going to make it go away. I think we all know that deep down anyway, but it takes a while for the thought to get a foothold and start to affect the way you view things. Even before I realised just how poisonous extremes of emotion are on Fibromyalgia and Interstitial Cystitis, I’d decided that I could either choose to be miserable and angry to no effect, or I could make the best of things and choose to be happy instead. I’m lucky in this sense that I’ve a pretty upbeat disposition to begin with, which probably helped immeasurably.

The next stage was “grief”. The point where you start to realise the things you have to give up and the irrevocable ways your life has changed. I really challenge the seemingly oft-held view that you should never complain about it. Of course you should complain! It’s a very upsetting and world-tipping-upside-down situation, and as was pointed out to me some time ago; your friends don’t always know they’re needed unless you speak up and tell them. Grief, as with so much else, is somewhat inevitable.

(The 7 stages of grief - courtesy of

I think guilt becomes embroiled in both those phases somewhere along the line. 

Guilt that you can’t fulfill everything you did before. 

Guilt that you’re not the same person as you were before. 

Guilt that the changes affect others and not just yourself. 

Guilt because you are what you are now.

I chose to bring this up now because of a situation arising for my partner where I have cause to feel quite guilty. Without going into details, my illness and ability (or comparative lack of) to live on my own without snowballing down into totally bed-ridden again could be very problematic for him. It’s a difficult thing to talk about and we’re committed to doing our best to work around it and find a path that balances on all fronts. This doesn't stop me on low days feeling like the proverbial albatross hung round his neck. This actually led to my first period of sickness absence from my new job as the overall stress brought on a massive flare. One day of flaring and a further day of recovery forced me to get a grip on the feelings of guilt, examine them and start to deal with them anew.

I don’t have all the answers. I wish I did. I can only convey what I find and hope it’s of some use to others as well.

The way to combat this? I've said before that I consider myself immeasurably blessed in the friends and family I have around me, but even so I need to put my foot down on occasion. My Dad has something of a catchphrase - "Everyone thrives on information" - and I feel this is relevant to both the ill person and their carers and supporters. It's in everyone's interests for you to be entirely clear about boundaries of what you can and can't accomplish or attempt, and those also affected need to be made aware of this calmly and politely. I'm told off by my partner many a time for my habit of apologising and explaining if I ask him to do something for me, so it's a habit I'm trying consciously to break.

This is in part wrapped up in being an advocate for your own health. It requires assertiveness on your part in knowing what is sensible and best for you and your overall health. Your health has to come first - before anyone else's convenience and before your own sense of guilt. The simple fact of the matter is it does nobody any good if you overstretch yourself and make yourself worse purely because you didn't have the heart to tell someone it wasn't possible. It's a slow process to learn to be able to ask without guilt, to state your case without embarrassment and to stand your ground without fear. I'm no angel with this - sometimes I manage, sometimes I don't. Consistency only comes with practice though, and I am trying to make an effort.

(More than a little pertinent. Courtesy of

This for me is best found in the final stage of that truncated grief process – acceptance. Acceptance that (to quote the brilliant Hank Green) “your new normal” is what it is and that presents certain challenges. You can’t do anything about them – neither can anyone else. You didn’t ask for this and you didn’t ask to cause problems for others. You can only do what you can, and I firmly believe nobody should be put in the position where they place their overall health on the line in response to misplaced guilt.

This is not your fault.

You haven’t done anything wrong.

You didn’t ask for this.

I’m going to close with a favourite quote of mine:

“No one can make you feel inferior without your consent” 
– Eleanor Roosevelt

Do not give yourself permission to make you feel inferior
Wishing you all many spoons xx


  1. A really great post.

    When I first became ill I raged against it, and did so for about 3 years until I got to the point where I was sofa-bound when I wasn't bed bound. It took that long for me to test/prove that it was in fact happening, I wasn't imagining it or putting it on, and that YES my body was kaput. Part of this 'testing out' process for me was giving up my full time job, doing part time voluntary work, then after a long rest doing part time paid work, until I was getting injured so regularly that I had to re-assess, and admit even working 15 hours a week wasn't in my capability.

    This is a massive source of guilt, as my poor husband works so incredibly hard. For a long time I 'made up' for this by being as Stepford wife-esque as possible, but these days cleaning out my emails is taxing, let alone cleaning the flat. Hubby comes home from work, wrestles the hoover from me when I've been stupid enough to waft it around, puts his tea on and makes me a cuppa while I sit like a mad woman on the sofa repeating words to myself over and over so I don't forget what is it I need to do/say next.

    When the bath buns at the DWP stop my ESA (which they will do in about 9 months since they've put me in the work focussed group) I have a choice - go back to work and totally ruin what gossamer strand of physical health I have remaining (and utterly annihilate what's left of my mental health) or downscale my already very small life to a teensy weensy life devoid of all pleasure, just to get by.

    I know it could be so much worse, and I am extremely thankful for my husband, my understanding friends and my supportive family. The guilt is something I'm working on, but more than anything at the moment I'm consumed by anger at the way the Government are treating the sick and disabled.

    Sorry for the uber long comment - I really enjoy your writing. It's very thought provoking!

    1. Thank you Leah! :)

      Whilst it doesn't directly affect me as I'm able to hold down full time work at the moment (with a very understanding company who make concessions - I don't think it would be possible otherwise) it still makes me angry to read about the way it is being handled. No thought at all has gone into it and it's downright cruel. I'm sorry to hear you're going to have such a tough choice to make :(

      I think we all do the "it could be so much worse" thing a bit - our experiences are worthy of discussion and they'll always be someone worse, but that never makes anyone's experiences less valid :)

      Thank you for the kind words - I seem to have found I can waffle whilst making it look planned haha :-)


  2. I think I'm still angry. Or in denial. I was never shocked, as I have friends with FM and was fairly confident before a GP and 3 specialists confirmed it, but I'm not convinced that this is it forever, and I therefore carry on as if I've just got a long-lasting bout of flu. I do feel awfully guilty about letting people down and not doing things because I can't on any given day. Not managed to cure myself of that...

    1. I'm very inconsistent still - some times I can psych myself up positively and shelve the guilty feelings, other times I'm virtually poleaxed with it. I suppose nothing given easily was usually worth having - I hope like you it's not forever and that one day we'll all know what to do to get better. Wishing you many spoons :) x