Saturday 24 September 2011

Denial is not a river in Egypt

There is no magic pill, drink or technique that will cure you of having a chronic health condition. Well-meaning people will say in the early days, "Oooh try this thing".  Or, "I've heard if you cut out bread, wheat and chocolate digestives you will be just like you used to be."

And that’s the key - just like you USED to be.

You know!  Normal.  When you thought nothing of working all week.  Getting home on a Friday, then quick change and off out.  Get the housework done Saturday, out with friends, chill out on a Sunday.  Plan your week, maybe even plan months ahead.

Do you remember being that person?  I do!  I remember her saying, "Yeah.  OK.  Well, I'm busy for ages.  Can we pencil something in for October?", when you’re sweltering in the July heat.  I worked hard as a high flyer.  Making important decisions, planning months in advance, having a CHOICE.  Even if it was wasting my life putting off what I didn’t really want to do; or was frightened of doing.

Getting diagnosed is like bereavement. Sadly the person you are mourning is yourself.  You begin to see life differently and it falls into 'before' you got ill and 'after'. Everything is now measured by that.  "Before I got ill, I could and now I’m ill, I can’t."

Friends and family listen patiently, offer helpful advice and sometimes get caught up in trying to find a cure, or maybe even think you're faking it a little.  After all, you don’t really look sick, do you?  How can you be full of beans one day and turning down their invitation the next?  You show them the spoon theory, explain it and hope they understand.  Maybe you even try and keep up with them; denying you're ill and putting on a brave face.  It's not done to whinge or complain.  There is always someone worse off than you.

No matter how supportive everyone is, the guilt of letting people down and your need to be NORMAL drives you into denial.  You carry on trying to do everything you did before, burning yourself out so you end up more likely to not go out in the evening  Weekends turn into a duvet-fest of sleep, pain and a chance to take off the mask of “I’m ok.”  You will be back to your old self just as soon as the doctor prescribes you the right pain killers, when the physio stops talking and actually helps you. Of course there is nothing YOU can do.

Often the first thing you do is try and find other people like you.  Although they aren’t really like you because they have given up.  You're only joining a forum, reading a book, going to a support group to find out about the latest drug, or the types of treatment that are out there so you can go back to your GP and ask for it.  You need information so you can get everything you need. Where’s the best Rheumatologist?  Supportive GP?  Latest research?  What diet should you be on?  It's an endless search for the holy grail.  The one thing that will give you the key back to NORMALITY, back to the person you are. Not this sick person that’s not you.

Dammit how dare this stupid illness affect you like this, YOU can beat it right, you just need to carry on. If work will be a little flexible you can manage full time, having a little nap when you get in will let you go out, change those killer heels for flats and of course you can dance till dawn, if you’re good all week the carb fest at weekends wont break you, a slow swim than a full work out, meh you never liked the gym anyway. The washing up can wait; maybe you will buy a dishwasher. The new dress you bought without fiddly buttons is well comfy. Only you need to know about the ton of used tissues hidden behind the loo from all he tears, how the pain at night sends you demented, or how bone wearingly tired you are. No one needs to hear that more importantly if you given into it then it becomes REAL and not just a temporary setback on life’s journey.

One day I assure you, or maybe you already know because you have reached the next stage, you hit a brick wall it gets so bad you have to STOP and own up it really is that bad and no you’re not coping. There is something you can do but you have to be ready to recognise that. It has taken me two years to reach this sage and even now on good days I still think I’m superwoman and can do all the things I used to you know before fibro.

If your not ready, or have just been diagnosed then finding an online support group like UK Fibromyalgia or just googling Fibromyalgia will give you a host of information, advice and support. If that’s as much as you do right now, while you struggle to accept that this is here to stay then that’s brilliant.  Maybe you have been bumbling about for a while, saying the words and doing what’s advised but until YOU accept it, on an emotional level then you wont move forward. Its ok to not accept, and perfectly normal. There is help when your ready.

I would like to see a care package and acceptance from the medical establishment that when someone is diagnosed with a life long debilitating condition counselling is offered immediately – and if not then a referral to a support buddy so someone isn’t alone. After all there plenty of people who could do this – Im one of them maybe you could be too. here is some great suff happening in the UK but its patchy and badly advertised - and certainly not very well supported by the people who we turn to first our GP's. but thats definately a whole other blog.


  1. I absolutely love your idea of what should happen upon diagnosis. I was diagnosed with my conditions when I was 9 and then when I was 15 an injury made them a daily living hell. They may be life long, they might get better but still be there a bit in my life but for now I am disabled and chronically ill and can't remember being a healthy person anymore. The best thing I have ever been referred to was a group pain management course that understood how much things affect your daily life and offered great advice, I think services like this should be so much more widely available because they make such a difference to the lives of those who attend them!

    I still get people offering bits of "possibly life changing advice" and some still think I'm going to somehow get to university soon. But I've accepted that for now at least I am long term ill, in constant pain and I've just got to get on with my life the best I can. If a fabulous new treatment comes along that's great but I've got to do the best with what I've got.

    Sending you lots of love,

    Florrie x

  2. Hi Florrie, thank you so much for commenting.
    Glad you like the idea, it just makes so much sense to me, yet its a complee lottery wha kind if any after diagnosis support you get.

    I hope you do get to Uni and fulfill your dreams, love your blog. Fight for that place at Uni, there are ways and means they can help - jus makes me so dam mad that the fighting for things others take for granted can make things so much worse.

    I will get some more tohughtsd togeher and some research perhaps to show it would be a far more cost effective use of resources to do things differently.



  3. Quality of care shouldn't be such a lottery either. We both know what that's like, even being in the same city as we were, and being refered to the same hospital rheumatology department ... the difference between the two rheumy consultants we saw was amazing - one cared, the other just didn't give a ****!!

  4. I totally agree with you Sim, there are some really bloody simple ways of overcoming this to, im working on writing them up. I know work is going on to change things and highlightt the issues.

    Sadly this doesn't help when like you say Rheumy consultants in the same dam hospital can't even agree on a diagnosis. and Im certain some of that could be oversome with how they ask for information.

    I Think I will write this up today


Happy to have thoughtful, funny or imformative comments..abusive crap will be deleted