Living With Chronic Illness-It’s Letting People Down That’s Hardest

For anyone living with a chronic illness, the challenge is not only coping with the actual symptoms of their particular illness but also dealing with the impact it has on their relationships.  Chronic illnesses have a strong psychological element to them.

Let me tell you a story…

It was a gleaming mint hybrid bicycle with a basket.  It sat beckoning, with a promise of endless summers freewheeling through fields filled with wildflowers. There were picnics to be had by bubbling streams, whilst lying on picnic blankets chewing straw and watching the clouds make wispy shapes in the matchless blue sky.

The husband was excited.  The kids were excited.  They all had bikes and were waiting for me to join them on the cycle paths. What could possibly go wrong?

Except.  Except…..

Back in the early 90’s, I had gynaecological surgery which has left me with what my consultant calls unprovoked vulvodynia.  This is a condition which is rarely written about and, as far as I can tell, its existence is frequently denied by the family of the sufferer, being so nebulous, difficult to treat and well-nigh impossible to explain to someone who hasn’t experienced it.  It is a persistent pain in your ‘bits’ which comes on for no particular reason.

Couple that with a bad back and my glasses OCD which means wearing any sort of headgear brings me out in a cold sweat, and you can see that I am hardly primed to join the ranks of the sporting elite any time soon.

After approximately 15 minutes of trying out various saddles, it became clear that cycling was going to be a painful experience.

The bike went back.

I felt guilty and vaguely ashamed – as if I had let everybody down.  But you see it has taken me years to recover from the surgery (and since then I have had 2 caesareans) and the thought of undoing all the care I have had to take was too much to bear.

The experience led me to reflect that, for many of us dealing with daily health problems, whether it is a condition which comes with chronic pain or even if we are just dealing with a collection of what others might term ‘health niggles’, the impact of our suffering on others adds to the stress of the health complaint itself.

Living with a chronic illness seems to leave us stuck between a rock and a hard place, desperately wanting our bodies to look, feel and behave like they did when we were young and struggling to understand how we ended up like this.

It comes on gradually for some of us, doesn’t it?  Lack of exercise, poor diet, poor sleep. More than that, we want to join in and have a normal family life. We want the memories we create to be happy, fulfilled ones – not that time Mum put her back out and spent the afternoon sat in the car.

As mothers, we get used to putting our own needs second to those of our children.  How many of us miss the weekend lie-in and get all misty-eyed and nostalgic for the days when Sunday mornings started at noon?

Weekends used to be times when we would recharge our batteries, both mentally and physically.  Times, when we could, at least to some extent, get, rid of any stress and strain which had built up over the preceding week.

It makes it all the harder, then, when we can’t acquiesce to our children’s need to be ever active, ever pushing the boundaries of what their young bodies can achieve, but with us at their side.

I’m sure there is a compromise.  I am equally sure that self-pity will get us nowhere either. But occasionally, it is nice to hear that someone understands and gives you permission to acknowledge that, for whatever reason, you just can’t join in.

And, when you’re living with a chronic illness, that’s the permission we need to learn to give ourselves – without the bucket load of guilt that usually comes with it.

Further information on Vulvodynia is available on the NHS website.  

Ladies, if you have any kind of unexplained pain or discomfort, please see your GP – and remember it is not all in your head. Nobody knows your body as well as you do!

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  1. Dan Borley
    14 July, 2019 / 4:05 pm

    Great article, thank you

  2. Anthea Holloway
    14 November, 2018 / 4:48 pm

    I know how you feel and it is so good to read this and know that I am not alone!

    10 November, 2018 / 9:37 am

    Absolutely agree with you, as someone also living with a chronic illness – Fibromyalgia, deafness, the guilt about the impact on family always makes me feel worse. Great blog article, thanks!

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