She’s So Inspiring – Rachel Faith Cox

She's so inspiring

My life has been touched by some uber amazing women whose passion for life and the way they  choose to live it have really inspired me. Some are bloggers, some are not, their lives are all different and  they are all special. I feel honoured and privileged that they are sharing their stories and sprinkling a little bit of their awesome right here. May you be wom-inspired!

Meet Rachel Cox.

Let me start with a disclaimer, having an illness or a disability doesn’t make a person inspiring, but the way that person deals with it certainly does. That’s why when I discovered Rachel on the interwebs, I knew she had to be part of this series. She is a loving wife and mother, a gifted writer, a fashion model and she is also living with an invisible illness. I’m so honoured that Rachel is sharing her story here, because it’s powerful, enlightening and inspirational all at the same time and it’s well timed too, because October is Dysautonomia Awareness Month.

Rachel Faith Cox

Tell us a bit about yourself.

My name is Rachel.  On the outside I look like a normal, forty-something Mum.  Sometimes I am glad for the anonymity of that. Sometimes, passing as a well person is brilliant because I don’t have to explain anything, I can just skirt the peripheries and get on with things as best I can. But other times, when the struggle is big; it makes me feel so alone, so misunderstood, so passed over. I ache to think of all other people out there struggling like this, too.

Rachel Faith Cox by Beverley Couper

I have an ‘invisible’ illness. It’s a neurological condition called Pandysautonomia which is a dysfunction of the autonomic nervous system. That’s the control system that coordinates all our automatic functions. Heart rate, blood pressure, breathing, digestion, bladder and bowel function, temperature regulation and even the way the body manages moving from lying or sitting to standing. People with Pandysautonomia have trouble being upright.

I’ve been various stages of sick for nearly seven years. When I was diagnosed, the docs thought I had a progressive form, my heart had been stopping and the pacemaker they fitted was recording increasing numbers of events. There were times, stuck in my bed that I thought I was on a trajectory to oblivion. I grieved a lot. I prepared for the end, coaching my husband on all the things he would need to know for the kids. Making a record. Making memories whenever we could. Now, we know that my unique variation of Pandysautonomia waxes and wanes, it has as autoimmune origin. This is a brilliant development and may open up more options for treatment.

Right now, I am doing really well with my health. And that is such a wonderful thing! For the first time in years I am active, out and able. There is so much joy in being able to DO things that were out of reach for me before. I’m out of my bed, I’m attending school things for the kids, participating in society, spending time with my loved ones and revelling in the simple acts of everyday life that well people sometimes take for granted.  It’s so nice to be able to stand in the kitchen for long enough to prepare a whole meal. To go for a walk. To do the supermarket shop with ease. To go to the loo like normal people do. 

Rachel Faith Cox by Beverley Couper

There is more to me than my illness. Before I got sick, I was a teacher and a new mum. Our kids are now 10 and 8.  Back when they were little, I was teaching a class of gifted poets; blithely going about life in my beautiful city of Auckland, as if normal life was my right. I am creative, I love to draw and paint. I am a blogger and a freelance writer for various online publications. I love road trips and travel.  I’m also really tall and roundish… and just recently I got signed by two modelling agencies, here and in Australia, as a curvy model. I would never have expected that at the ripe old age of 41, but it’s great fun!  Did you know that in the US, 70% of online fashion purchases are by women sized 14 and over? It’s a growing market (pardon the pun!). I’ve been loving it. This is a stylist fussing over my outfit in a recent photo shoot.

Rachel Faith Cox

Tell us 3 things you are and 3 things you’re not. 

I am strong-minded; thoughtful. And so grateful to be here.

I am not patient (although I am a patient).

I am not interested in the details, much more of a big picture person.

I am not ashamed of my body anymore, I am proud that it has carried me through scary territory and I want to celebrate the brilliance of it.

Complete this sentence, ____________________  changed my life. How and why?

Getting sick changed my life. It made me realise how strangely we prioritise when we are well, because all that really matters is people. Connection. 

Getting sick also took me away from my career and gave me the time and motivation to write. I love writing and it has brought such joy into my life to be doing that again. Getting sick also stripped me of the silly issues I had with how I look. I got over my self-limiting body hate. I wish that life lessons like these didn’t require hardship, but it does seem like so often it requires mining the depths before you can get to the gold!

What has been life’s greatest lesson?

For me, it’s never to waste an opportunity to truly connect with people. It’s all about people. There is such magic in discovering who people really are; underneath the face, the lifestyle, the trappings of normality.  So many people traverse their time on the planet just yearning for connection.  So I make eye contact. Ask how people are and mean it. Sit with conversations. I learn from everyone I meet.

What is your biggest achievement?

That’s a hard question!  I’d say mothering my kids, through adversity, with love.  They’re awesome people. 

But I am also proud of the way my husband and I have hung in there.  60% of marriages where one spouse is chronically ill, end in divorce. I feel incredibly fortunate to be married to a good man for whom marriage means forever. It’s hard work for both of us, but we’re stronger than we have ever been and I am still thrilled to be his missus! 

On another level, I am proud of my blog. It has given me an enormous sense of achievement to use my voice and find readers who want to hear it. The blogging community is a beautiful, encouraging place to hang out, too. I feel so lucky to have found it!

The Chronic Ills of Rach

What has been your toughest obstacle and how have you overcome it?

Losing control of my bowel and bladder function has been the toughest.  It’s not the most debilitating of the dysautonomia symptoms, but it strikes right to the heart of my self esteem and produces so much shame.  For me it has been either incontinence or retention. Both are deeply unpleasant. Once, after a particularly embarrassing ‘void’ in public, I cloistered myself away for a bit, afraid of having another incident. Then I decided that I couldn’t hide from something I couldn’t control. I made myself up an emergency kit for the car; clean pants, continence garments, deodoriser and wipes (my own ‘nappy bag’) and carried on. It’s empowering to take charge of what you can control and leave the rest to itself. I’d miss out on so much if I let the fear of embarrassment take over my life. Just getting on with things has been my best lesson about overcoming.

Viktor Frankl says “Those who have a ‘why’ to live, can bear with almost any ‘how.” Everyone needs a purpose, what’s yours?

What a cool question. My purpose is to give voice to the invisible. To shine a light on the very real plight of so many people out there. People who don’t always have the words or the energy to express what is going on for them but yearn for a world that is more kind. I use my words to explain it so that their loved ones and social circle can begin to understand.

What are your words to live by?

Do the best you can.

If you could have any mentor, alive or dead, who would you choose and why?

My Mum was and is my mentor.  She passed away eight years ago.  I am glad she didn’t see me sick, but I miss her so much.  She was an incredibly stoic woman.  She battled ovarian cancer with enormous grace and dignity.  I learned so much from travelling that road with her that has fed my soul during my own troubles.  I often think ‘what would Mum say about this?’ and it helps to guide my response to the big life stuff.

If you could play hookie for a day what would be on your list to do?

All The Things!  But I’d most love to dance… and to go on a road trip with no destination in mind, just letting the road take me somewhere new.

You give so much to others, what do you do to take care of yourself?

I keep a short account with my man, we talk about everything, and that keeps our relationship healthy and vital. There’s so much a good relationship gives back, I definitely consider time with the hubster to be self-care!

I have a brilliant osteopath who massages like a maestro and is a great friend as well. Time spent there is better than therapy.  We laugh a lot.

I see a health psychologist when I need to.

I spend time with my bestie.

And sometimes I get my nails and my hair done. That makes me feel all ‘put together’ even when I am falling apart!

Thank you for sharing, Rachel.

Let Rachel inspire you a little bit more…

on the blog 

on facebook

and on instagram 

October is Dysautonomia Awareness Month

Find out more about Dysautonomia here, here and here

  • That’s a lot to live with Rachael, what strength you must have found. Sending best wishes for your well times to outweigh your not well times. xx

  • You know, before I became involved in blogging, I had never heard of dysautonia. It sounds terrible- but I’m glad that people like Rachel are spreading the word about invisible illnesses- a little education and awareness never hurts! And Sammie I can see why she inspires you! What a great outlook 🙂

    • A lot of doctors have never heard of Dysautonomia either! The average time to diagnosis from onset is 6 years. It’s a tricky thing because so many of the symptoms are present in other disorders and Western medicine doesn’t generally look at the whole body, just specialising in systems. Thanks for the positivity Handbag Mafia!

    • I believe that knowledge is power and awareness is key, so I’m grateful to Rachel for putting it out there and the work she does demystifying invisible illness.

  • Natalie @ Our Parallel Connect

    thank you Sammie for another inspiring woman. i have read Rachel’s story in the past and find her strength, her ability to keep getting back in and fighting truly amazing.

    • Thanks so much Natalie 🙂
      I just had a little ‘wow’ moment to think that someone might have read my story before. That’s cool. Nice to ‘meet’ you!

    • Touche my friend! x

  • wow – this is what I needed to read – an incredibly beautiful and talented woman and mother who is such an inspiration. My hat goes off to those who live with these silent diseases, the ones you don’t know much about. What strength and an incredible family Rachel has and I take my hat off to her. Such a gorgeous and inspiring woman! x

  • writeofthemiddle

    Wow Rachael – such a hard way to learn such significant life lessons. I’m so glad you are feeling well at the moment. You may not realise it but you are so incredibly inspiring with how you accept what life has thrown at you and you get on with things the best you can. I had never heard of dysautonia but now I know of it. I also wasn’t aware of your blog but will certainly be popping over for a visit. How fabulous that you have such a devoted, committed and loving husband! By the way – you make a beautiful model! 🙂

    • Gosh, thanks writeofthemiddle (how cool is your name!) I’d love to see you over on the blog, it’s one of my favourite places to hang out, so many lovely people to chat to and meet. X

    • As much as I’m so honoured to be sharing Rachel’s inspirational story, I’m really pleased that it’s raising awareness of dysautonomia and directing some traffic to Rachel’s brilliant blog. She’s a woman of many talents and writing is one of them!

  • You have such an amazing attitude Rachael. I love your modelling photos.

    • Thanks Dani! That modelling thing is a new joy for me… I am really loving it!

    • This year The Annoyed Thyroid. Next year, New Zealand’s Next Top Model! Those photos are class!

  • Oh Rachael it must be so difficult to live with this. I feel for you. The way you deal with it and the way you take the most out of life is indeed inspiring.

    • Hi Malinda, it can be very difficult, but if you can’t change something I reckon you may as well spend your energy where it is useful. Raising awareness of Dysautonomia has been a really productive use of my energies, and it has been a gift to be able to see life differently. I am so grateful for that part. 🙂

    • I think Rachel embodies the theory that we can’t choose what happens to us in life, but we can choose how we deal with it. And she deals with it so brilliantly – turning negatives into positives with aplomb. She really is so inspiring.

  • Great choice for your series Sam, I am in awe of Rachel

    • Aw, Sarah. Ditto!

    • As soon as I discovered Rachel on the interwebs, I knew she had to be in the series. I am so thrilled that she agreed. I am in awe of her too!

  • Jenni from styling curvy

    Hi Rachel, you rock sista 💕

    • Thanks Jenni! I owe you the shift in my view of my body, I will always be grateful for finding you through Nettie. Your body-positivity is incredibly inspiring. If I rock, then you mountain!

    • You two, partners in awesome!

  • Kirsty @ My Home Truths

    I love how Rachel has found a new direction, in spite of, and also because of, her illness. Discovering her love of writing while she was ill and now becoming a model – there is nothing more inspiring than positivity and graciousness in the face of adversity.

    • My mum would have said that about graciousness Kirsty! I think it is really important to try to manage things with grace, it makes it so much easier for everyone around you. I feel so lucky to have found writing! Blogging makes my world go round. Bloggy types are so truly cool to each other. I love that.

    • I think you have totally summed it up Kristy “there is nothing more inspiring than positivity and graciousness in the face of adversity.” I hope you don’t mind but I love that quote so much I might have to steal it (and credit you, of course!) x

  • Holy crap I just read the poem in the link – In the event of my demise. Not for the faint of heart but so, so beautiful. In awe x

    • Oh! Thanks for clicking through to that Nancy. I am really glad you think it beautiful, I was so stumped about how to write it that the form it took was the only way through. X

    • Rachel is as beautiful as her poem, inside and out! x

  • Wow. So wonderful to meet you Rachel. Inspiring indeed.

  • Lorraine @ Not Quite Nigela

    This was really such an interesting read. I had never heard of Dysautonomia before. Rachel is very inspiring indeed.

    • Hi Lorraine, thanks for that beautiful comment, I am so glad to be raising awareness among Sam’s peeps! Thanks for reading 🙂

    • I hadn’t heard of it either until I “met” Rachel. Awareness is a very powerful thing and Rachel is a very inspiring human. Totes honoured to have her be part of this series.

  • Thank you for sharing Rachel with us. I’m off to find out more. Google, I’m coming for you.

    • hey Melissa! That is so cool! You are SUGER!!!! OMG, I am beside myself! You are like, a hero of mine! woooot! Thanks so much for reading!

      • Well HELLOOOO lady. Haha. You, my dear, are a legend. I’m so glad I found your story here. x

    • Rachel is so awesome, isn’t she? Sharing her was such an honour!

  • Grace

    Thanks for sharing Rachel’s story, Sammie. And yes, how we deal with our curve balls is what makes people inspiring. Rachel has risen above it all.

  • Hi beautiful Rachel! How great to see you here. You are one of my biggest bloggy role models. Amazing, thoughtful, beautiful woman. Always supportive of others and now a model – woot woot!!