Rachel Deacon – March 2024 – #IWD

Before you start reading this inspirational piece by Rachel, I (Carol) wanted to add a few words.

When I asked for inspirational stories for our International Women’s Day series of “Be Inspired – Be Inspiring” I never thought I would read such an incredible story from Rachel.  The way Rachel has dealt with her invisible disability is extremely inspiring and no doubt many of our COGS will be as surprised as I was to read this.

It also got me thinking about the many women who go through their lives just “getting on with things” that other people have no knowledge of.  I’m totally in awe of Rachel’s courage.  As I read Rachel’s story for the first time, I sat opened mouthed at her sheer bloodymindedness in making sure that her invisible disability doesn’t define her and if you know how humble, kind and just generally what a lovely person Rachel is, you will not be surprised how she just “gets on with it”.   Ironically, it was on the 8th March (IWD) 1991 that Rachel had her operation, 33 years ago to the day!

Anyway, enough from me so please read what Rachel has written and share with your friends to show them that Women’s Recreational Football is for all and if you’re not sure about it, I think Rachel’s story could make you think again.  Honestly, Rachel is so humble, she even said “I’m not sure if this is inspirational at all but I am all for spreading awareness of invisible disabilities and hidden health conditions”  What an absolute QUEEN!

Here is Rachel’s “Be Inspired – Be Inspiring” story….

“I was diagnosed with a clicky hip at birth. For the first month of my life I was in double nappies and I was put in leg braces until 5 months old when, sadly, they realised that I had been misdiagnosed and my hip was infact dislocated from birth and not just clicky.  At 6 months old I spent a month on hoop traction at St Helier Hospital. I then had my ligaments in my groin cut, my hip was manipulated and then I spent 6 weeks in a body plaster.

After 6 weeks the plaster was removed and replaced with a metal calliper until I was 18 months old, during which time I managed to learn to walk at 13 months old with the calliper on.

At 18 months old my parents were informed that all previous procedures had failed to fix the problem and that I would need surgery. I needed a hip socket reconstruction operation to avoid long term disability.

On the 8th March 1991 having just turned two years old, I had surgery to build a deeper hip socket to help retain my leg ball joint. I spent 6 weeks post surgery in a frog plaster that weighed 16lb when I was only 22lb myself!! I then later had a further surgery to remove pins from the hip reconstruction.

During my childhood I had regular check ups and I’ve had hundreds of X-rays at St Hilier until the age of 14. Due to the incredible work of surgeons I was lucky enough to live a very active childhood with no side affects of the surgery and no limp. I was very sporty including golf, dancing, netball, tennis and swimming- I absolutely loved sport!

Fast forward to 2010 when using an exercise bike in a gym caused my life to change. I felt a “ping” like I had just pulled a muscle initially but from then on l have been in chronic pain. I went undiagnosed from 2010 until 2014 despite many investigations such as nerve conduction tests, countless MRIs and injections etc etc. I finally found an amazing surgeon in 2014 who diagnosed me and found the cause of my pain…. My sciatic nerve had become twisted and trapped in my pelvic region and had stuck to all the scar tissue that was created by my operations from when I was a child. I had further surgery for nerve release in 2014 and 2016 which has helped but sadly has not cured me.

In 2020 I was also diagnosed with Pelvic Congestion Syndrome and had 2 operations during lockdown (whilst awake) as well as 4 other local procedures in my pelvis. I have since had multiple other procedures to attempt to ease my pain, and manage other conditions – Pudental Neuralgia and Perifomis Syndrome, which I now suffer with, also as a result of having years of chronic pain and nerve issues.

For a long time I struggled to come to terms with the fact that I could no longer be the active person I used to be and I really struggled to get my head around the fact one day I was fine and the next I was in debilitating constant pain & why Doctors couldn’t find the cause. I just about managed day to day life being in agony yet having to just suck it up, work full time, be a mum and act like I was OK when I really wasn’t. I had an enormous amount of mum guilt as the most simple activities with the kids and daily tasks that people take for granted were all tainted by pain or unachievable.

Living in pain daily is so debilitating. Nerve pain is relentless. I have had to alter lots of things in my day to day life to make my condition more manageable, from clothing and footwear to limiting certain activities as well as medication and knowing my limits. Thanks to all the various operations I do now have better days – thankfully. I still suffer daily, sometimes by midday I can barely walk or I struggle to stand. This is a lifelong condition, which I have now accepted, although I have never given up hope that I may one day be pain free again.

I have had some very dark days and experiencing this has really opened my eyes to mental health struggles and depression. I manage to get through by remembering that there are people out there that are worse off than me & I am lucky enough to have the support of my amazing family. I hide it very well. Only my closest family see my struggles and have seen me at my lowest. Over the last 14 years I have truly mastered the “brave face”. I am also too stubborn for my own good and I’m not very good at being honest & admitting when I am struggling.

I never thought I’d be able to do football but I was so keen to give it a go whether it flared me up or not. I had heard of COGS years ago but could only ever dream of being able to be in the position to give it a go. Inspired by my amazing daughter, now 8 years old, who has played football since she was 4 really made me want to give it a go. I grew up with my football mad brother and my Dad who was a goalie for Horsham and represented Sussex in his day, so l was itching to have a go myself! I went to my first COGS session in July 2022 and thoroughly enjoyed it. I was SO nervous to try it out but everyone at COGS was so welcoming, encouraging and so friendly – it’s like an extended family. I have since been lucky enough to take part in a Lancing Tournament, a goal keeping workshop and a footballing trip to Milton Keynes with COGS.

I joined the COGS Xtra sessions on a Monday which I absolutely LOVE. I may not be able to attend as regularly as I’d like to – some sessions the pain is more manageable than others, other times I flare up after and some days I can’t make it due to pain. I will continue to play when my condition allows and hopefully show people that even when your life takes an unexpected turn you can still enjoy moments between the dark days, make great friends and feel lucky to be alive.”

We’re very proud of you, Rachel, for your strength, determination and inspiration!