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 medstorerx.com)

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 bodytypenutrition.co.uk)

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