Additional Needs

The cost of invisible illness

Posted by Carolyn Voisey on 25th November 2019 Additional Needs, Advice & Support, Disabilities

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November is Epilepsy awareness month.. and also for Complex Regional Pain Syndrome (CRPS, or RSD).

Sam’s Aunty has lived with CRPS for the majority of her adult life. Sam and I decided we wanted to raise awareness about this too, as it is little understood but life changing.

CRPS is the most painful chronic pain condition known; more painful than digit amputation and non-terminal cancer.

It is constant. There is not a moment when you don’t feel like you are being burnt alive.

Often it is triggered by an injury; surgery for example, but not always.

It can affect any part of the body internally and externally.

There are so many more symptoms than just pain; discolouration of nails/skin, swelling, skin temperature changes, extreme sensitivity to touch (allodynia).

It is almost always life-long; and with no cure and limited therapy/pain relief options, it is a truly horrific condition.

Sam’s Aunty is awesome. Despite the agony, she gets on with living - forcing herself to walk to the shops, cooking, cleaning, looking after her family.

She has internal organ dysfunction as an effect of the condition. She gets onto Sam’s level and plays with him, keeps him safe during seizures, even though the cost to her is immense and she will pay for it for days.

You will never hear her complain, even when the pain is so great that her eyes betray her even when her face does not.

This lady has supported us since Sam was teeny; she has helped me see the wood for the trees, and not to lose myself to panic.

She taught me that life with serious health issues does not mean a bad life; acceptance comes with time. It is ok to go through the stages of grief, you will come out the other side.

She teaches my son the same, and he learns from her that anything is possible.

Many GP’s or consultants don’t understand the condition, family and friends can’t understand why patients aren’t improving.

It’s easy to underestimate the courage it takes to keep on living, not just existing, when your body has turned against itself.

Living involves doing; to do that you need strength of body and mind to keep smiling.

Invisible disabilities are as real and debilitating as any other. Be kind, you don’t know what someone may be dealing with.