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 a 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 just 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 even 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.
Denial, Anger, Frustration, Fear, Sadness, Loneliness, Worry become unspeakable words – to say them out loud even in a whisper late at night to yourself is unthinkable. So you carry on taking the pills, leaving the stuff your doctor gave you unread..life carries on right?
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 won’t break you. Changing to a slow swim rather 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 give into it then it becomes REAL and not just a temporary setback on life’s journey.
Anger, Frustration, Fear, Sadness, Loneliness, Pain, Desperation & Worry no longer get denied, they clamour to be heard and spoken out loud
One day I assure you, or maybe you already know because you have reached the next stage, you hit a brick wall and 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 it. Very often the first and most positive step you can take is to reach out to others.
Finding an online support group like UK Fibromyalgia or just googling Fibromyalgia support 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 won’t move forward. It’s ok to not accept, and perfectly normal. There is help when you’re ready.
This first blog looks at the beginning of getting your head round and accepting that a diagnosis of a chronic health condition like Fibromyalgia is difficult, painful and at times soul destroying. It takes time, and all of us need support to come to terms with it. Sadly I don’t think there is enough support, guidance or help at the point of diagnosis.
In particular the impact is simply not appreciated, I was told by a senior Rheumatologist that Fibromyalgia is a hindrance to life not a destroyer – He was both rude and misguided. It is, in fact, both. However, it is possible to have a life, but before you can build a new one you need to grieve for the one you had.
Beth M
Beth is passionate about people, supporting, helping and encouraging them to live life to the full, no matter how limited their physical boundaries might be. Having been diagnosed with Fibromyalgia in 2009, learning to accept her new life hasn’t always been an easy journey. Beth takes an often light hearted and irreverent approach to tackling some of the issues that affect her and others living with a chronic debilitating condition. “I hope you enjoy my blogs, I feel very honoured to have been asked to blog for TalkHealth. No matter whether you have been newly diagnosed or trying to live with FMS or M.E or any other health issue for that matter I hope my blogs give you something useful” I look forward to “talking” with you – you can also follow me on twitter as fibro_girl or read my personal blog http://but-you-dont-look-sick.blogspot.co.uk/ Beth x
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Brilliant! You have articulated well exactly how it is – four years on after diagnosis and I still go into denial, perhaps more honest to say I am still in denial :). Gradually we get there – it takes time – the one component of grieving that we often resist the most.
on April 11, 2012 at 3:56 pm JillThank you for an excellent post.
Jill
Thank you Jill 🙂 I still get denial moments too – its always a case of one step at a time
on April 11, 2012 at 4:42 pm Beth MA fantastic and very informative piece of writing Beth. You have explained things so well. Having only recently been diagnosed with FM myself I have not reached that stage yet and nor did I think it could get that bad. I had heard of FM before but dont know a lot about it. I am still waiting on an appointment for the Pain Clinic at my local Hospital. I’ve been told this could take months as the waiting list is very long. The Orthopaedic Doc who diagnosed me after a couple of visits to him thinks I need a cortizone injection into my right hip. It is very painful. My sleep pattern has become very disturbed. I hada bad night last night with pains and little to no sleep. Today I feel very low & totally drained. To be honest I have spent it in bed. I feel I cannot bare too much noise. I tendto avoid answering the phone because I dont feel like pretending I am ok. God I could go on and on about me here.
I am just so glad to have come across someone like you.
Very well done on your written piece for the Health Talk Mag.
Lots of love & luck
Jackie
on April 11, 2012 at 4:38 pm Jackie MilliganHi Jackie – I hope you find some good support and the key to it is one step at a time, find out as much as you can and dont be too hard on yourself.
on April 11, 2012 at 4:44 pm Beth MOoohh Beth, you know I hear you and empathise; and you know you’re right, there isn’t the support out there to help. But, and it is a big but, does that exist?
I’m not sure anyone or anything can help you, me or any other Fibro/CFS/ME sufferer ‘come to terms’ with the fact that our lives as we knew them have ended. And I feel this is most likely the same with anyone experiencing a life changing condition and accepting they are disabled.
Disability is still, and now more than for a long time, a filthy word; and for those of us with Invisible Chronic Debilitating Conditions, we face the added challenge of looking “normal”.
I believe what is needed is far more research into these ICDCs, research that seeks to understand and perhaps more importantly validate them as REAL.
For me, the lack of research is the real problem, because how can we accept our condition and learn to adapt out lives to get best quality possible, when the experts don’t understand it?
Until they know what it is and can explain WHY we feel what we do, how on earth can we?
Keep up the brilliant work and achieve you goals girlx
on April 12, 2012 at 7:38 am Jayne LinneyHi Jayne,
I think you have raised some really good points and I will take soem time to look at this in a future blog – I cannot do it justice in a reply other than its a three fold issue – medical acceptance, social accentance, personal acceptance.
Thank you – you have really given me food for thought.
Im really pleased this blog has had such a postive response
on April 12, 2012 at 8:07 am Beth MHI Beth, great article, I think that among chronic illness sufferers sometimes ‘acceptance’ is a dirty word, and I completely understand why. For me I was diagnosed at the end of my first year of a uni degree, after having studied at lower levels for years P/T while working and there was no way I was going to let it beat me. I completed it through sheer bloody mindedness and went on to do a two year P/T PGCE which I failed to complete because I completely collapsed both physically and mentally, I just found my self one day in hysterics at the thought of trying to get up get dressed get to college and be coherent… It took; even after that, a great deal of time to accept the reality of my situation, that the person that was able to do all the things people do with out a thought, like shopping, or hanging the washing out, or having a social life, no longer existed. I can still do those things but I have to be careful about how I go about it, I have to consider what else I might have to do that day. and as we all know some times just getting up getting dressed is to much… The grieving process or the letting go of the old you is so hard but something I think there could be help with if there where more general support for suffers, someone else cant take way the pain that loss produces but they can support you while you go through it, and some never do, which is their rite… Thank you for using the ‘A’ word particularly in relation to the ‘F’ word it brought back a flood of memories about how hard it is to get on with having any kind of life with this illness. As I run an FM support group on Facebook, it does me good to be reminded what my members are facing and how support while they learn how to cope with it is so important… Dxxx
on April 12, 2012 at 9:35 am Debbie Sayers