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Living with Chronic Pain Syndrome: 'But you don't look like you are sick'

Kelly McGill explains what it’s like to have your life quality diminished by an invisible illness.

Kelly McGill
“You don’t look like you are sick.”

THIS HAS TO be one of the most irritating things to hear while living with chronic pain, and trust me it hurts the ears more to hear that than the cashier in McDonalds telling you there are no Smarties left for a McFlurry!

As much as I have grown to live with it, I live in pain every minute of the day without fail (even in my sleep).

To try and give you an idea of my pain, just try and imagine a little leprechaun living inside your leg pulling and tugging at all your nerves and muscles, causing you to spasm and twitch (which is a killer sitting beside somebody on the bus). Basically it stops you from living your life to the full.

This means walking more than a few minutes, sitting down for too long, enjoying yourself on a night out or trying to concentrate is a struggle. Trying to just do basic everyday things becomes an awful effort.

For people who have no idea what chronic pain is, in short, it is a disease of the central nervous system.

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I’m not writing to delve deep into the science about chronic pain but to give family, friends, partners and just anyone interested some information on how to help and support somebody they know living with an illness.

I have heard so many times how I look fine and as I said at the start, it is among many of the annoying things that people can say to me.

Take a look at this video for some of the top 100 things not to say to somebody living with a chronic illness:

Source: Gifted Life/YouTube

Having chronic pain has left me feeling isolated, depressed, hating the body I’m in and hating life itself.

At 24 years of age and living like this sometimes feels like carrying the weight of the world and more on my shoulders.

On occasion, I feel like I am in court being judged by many people who know me when they forget what’s really going on inside.

Just because I’ve built up the energy to go out but don’t stay dancing all night doesn’t mean I’m boring or that the pain has disappeared.

You might wake up with a hangover the next day, but I wake up in agony wishing somebody would help me put on my socks!

I want to talk about my emotions and feelings not to gain pity but to share my experience and open a doorway for people to help others around them who are also suffering.

Having chronic pain is such a mental challenge. I have to wake up every morning and look at myself – a girl who looks just like everyone else – but realise that I am ill and I cannot do everything.

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I have an “invisible illness” (so I read on many forums) so you cannot see me deteriorate the way other people affected by diseases do. That’s the main problem.

Asking for people to help someone living with a chronic illness is not a way of saying we deserve special attention. It is something that I want people to open their minds to, almost step into our shoes to understand how we feel.

Here are just three tips:

  • Be non- judgemental: This is one of the key elements that we need to be sturdy in our life. Some days we laugh, dance and joke. Then that might dramatically change by the next morning and we will be tired, grumpy and want to just stay in our room without being disturbed. This is not something that we can stop from happening; we are not trying to rewind time to our stroppy teenage days. Our good days are rare so please try and accept them.
  • We try our best at every moment. I try to fill my day with consistency, keeping busy (I write, a lot!) but sometimes all I want to do is lie down. If that’s the best I can do, please don’t force me to do something that I am not physically ready for. I could go out for an hour’s walk one day and not be able to walk more than 10 minutes another. That’s just the way my body works.
  • Trying to fill our heads with cures is not the way to go. If our doctors have told us to rest up but then you recommend yoga or Pilates, please don’t get insulted when we say no. It’s not that we don’t appreciate the help, it’s just we can’t do enough as it is so heading to a yoga class and not being able to do anything is just going to make us feel like bigger failures.

As I sit here writing this piece, I face an extremely difficult decision. I have chosen to get a spinal cord stimulator to ease the pain.

So far this has to be the hardest development in my life and needless to say I feel lost. However, I have decided that this is my final chance at having a normal, slightly pain free life so I have decided to go ahead with it.

A spinal cord stimulator is a device surgically placed under the skin which sends mild electric currents to the spinal cord. It creates a tingling in the area where pain is felt. It reduces that pain because the electrical current interrupts its signal to the brain.

I can only imagine how difficult it is for family members, partners and friends to deal with people like me.

I irritate myself daily and spend my days wishing I was better.

But please believe me when I say without the constant support and love we would be really lost without you all!

More: ‘Why am I on anti-depressants? Because I suffer from depression’

About the author:

Kelly McGill

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