“If we can share our story with someone who responds with empathy and understanding, shame can’t survive.”
~ Brené Brown
‘Oh, Nicole!’ That’s how the email started.
‘Darling friend, I’m so sorry to hear you are still battling Lyme disease. I hope you’re on the mend soon. Just wanted to give you some advice. What you write stays on the internet forever unless you decide to remove it, and even then it may be too late. So why on earth did you write about having incontinence? Nic, pull it down as soon as you can. That kind of stuff is so damaging for your image, and if you ever get a publishing deal you’ll regret this kind of over-sharing. Trust me.’
Hmmm….
Over-sharing? I don’t think so. Damaging? Some people will judge me, for sure. But they are not my people. You, dear readers, are my people.
Here’s what I know about my tribe, and about life in general.
Shit happens. Terrible, awful things can happen to good people for no reason. Life-changing accidents can happen in the blink of an eye. Wear and tear, illness and calamity can render the most sound of bodies and minds suddenly limpy, broken or cobbled together with tape, string, tears, stubbornness and fervent prayers. Many illnesses and incapacities are invisible. People live with all kinds of pains, traumas and problems that most people around them will never even guess at.
Right now I am suffering from neurological incontinence. Inflammation in my brain and nerves makes a signal go haywire and sends a message to my bladder instructing it to void. Which it does with no permission from me. One minute I have a full bladder, the next minute my bladder is emptying wherever I happen to be and no matter what I am wearing, doing or what my plans might be. It’s happened to me dozens of times over the years since I first began treatment for Lyme, and my solution is adult diapers. Which mostly work, and sometimes don’t.
People can suffer from neurological incontinence as a side effect of MS, advanced Lyme disease, brain or spinal cord injury, brain lesions, degenerative brain diseases, or the long term effects of radiation or cancer treatment, alcoholism or diabetes. It affects men and women, children through to people in old age. It affects me.
One day it may affect you or someone you love.
Few of us get a free pass through life with no adverse side-effects! My dear friend Carly-Jay and I often have a laugh over the bits of our bodies or bodily functions that fail us. We belong to a club of people who live well despite how our bodies sometimes misfunction or misbehave. We call that club the Unreliable Club and I’m sure some of you are already card-carrying members. (Maybe we need t-shirts!)
When I was first diagnosed with neurological incontinence (which comes and goes in me – I last had an attack a few years ago!) I looked everywhere for information and found almost none. It’s something no-one talks about.
So, I’m talking about it here. It’s not the end of the world. It can be managed. And it’s nothing to be ashamed of.
It’s just wee. Everyone does it. Every single day. It’s a normal part of life, and for some people it’s a part of life that doesn’t work well for any number of reasons. If more people talked openly about this kind of thing we’d realise just how prevalent these kinds of issues are AND THEY ARE NOTHING FOR WHICH YOU NEED EVER FEEL SHAME.
The Continence Foundation of Australia offers the following statistics:
- Urinary incontinence affects up to 13% of Australian men and up to 37% of Australian women (Australian Institute of Health and Welfare report, 2006).
- 65% of women and 30% of men sitting in a GP waiting room report some type of urinary incontinence, yet only 31% of these people report having sought help from a health professional (Byles & Chiarelli, 2003: Help seeking for urinary incontinence: a survey of those attending GP waiting rooms, Australian and New Zealand Continence Journal).
- 70% of people with urinary leakage do not seek advice and treatment for their problem (Millard, 1998: The prevalence of urinary incontinence in Australia, Australian and New Zealand Continence Journal).
- An Australian study found that over a three month period, 50% of women aged 45-59 years of age experienced some degree of mild, moderate or severe urinary incontinence (Millard, 1998: The prevalence of urinary incontinence in Australia, Australian and New Zealand Continence Journal).
- The prevalence of urge incontinence, which is strongly associated with prostate disease, is fairly low in younger males and increases to 30% for those aged 70-84 and 50% for those 85 years and over (Australian Institute of Health and Welfare report, 2006).
It’s wee. It’s not working in a very controlled manner in me just now. That’s okay. I have bigger stuff to think about. This is just small stuff, not worth sweating over.
If you feel the need to unfollow me, unfriend me or avoid me because of my bladder control issues and embarrassing habit of oversharing then go right ahead. I’ll still be here for you when life gets bumpy. And then I’ll remind you that you can still live the dream while rocking adult diapers and I won’t love you any less for it. Instead, I’ll be cheering you on!
Much love, Nicole xx
Dearest Nicole,
#AlwaysYourTribe,even if you kick us out.
Lots of warm hugs and the usual love prayers etc etc
Once again, you show the World what a true warrior is! No matter what struggles you are going thru, you share them with your tribe, and show us that we can power thru everything. Everyone has to cope with something, and you show us that we do not have to embarrassed, nor ashamed of what we are going thru. Now that is blessing us with true LOVE & EMPOWERMENT!!! Please keep on sharing your true story, as you are helping us all with our life’s struggle as well…..sending you lots of love!!! Always be you, your tribe absolutely loves you for that, and always will!!!
Minimising my online time and see this. Ah, our bodies, doing the best they and we can. Why the h&^% re emails of advice….again *facepalm* 🙄
Keep on keeping on sharing. You know me, ask a question on anything and you will get the frank, no hiding answer. It’s part of life, nothing to be hidden away and shamed. Love you <3
You just made a whole lot of people feel that they can let go of their own shame. YOU gifted many people with a sense that they are not alone…they are not being punished and are not a freak who should hide and suffer in silence. YOU just gifted some high voltage love to more people than you can imagine. YOU just helped to heal a lot of shame in this world. YOU are a treasure.
🙏 Thank you, Alice. That was a real boost for me to read that. Much love to you ❤️
Hey, I love honesty and keeping it real. I have interstital cystitis. So I know where you are coming from. Also I got bit by a lonestar tick in my area and I have a mammalian meat allergy. I can eat no meat from an animal with hooves basically. Only chicken, turkey and fish.
I’m so sorry to hear about your allergy, Jen. My next door neighbor here at the farm has the same one. Sending you much love xx
Oh good lord. Really? This stigma that somethings are ok to talk about and others are not has to stop. It’s shaming. Incontinence, mental illness, disease shouldn’t be met with shame! Let’s stop shaming people for sharing their story. Instead, let’s show compassion.
To that emailer, your email reflects nothing on Nicole but on your judgmental heart. You may have meant well but Nic is rightfully owning her story, it takes courage to do that. Why shame her?
Keep sharing your story, Nicole. You never know who might be helped by it, and who may, in turn, give you information to help you. You are loved and supported.
Good on you girl I admire you regardless you are real.
Thanks Julie! Nx
Dear Nicole, yup, you are doing a whole lot of good, sharing this with the world, and always so neatly educating People! Seems to me that you came on earth to tell your truth, let it be about health or the psychic abilities. Thank you!
I hear you, and I promise to do my best xx
Nicole – I don’t think anything or anyone is going to keep you from being the awesome Goddess you are. People need to talk about EVERYTHING – as long as it’s the TRUTH! By your sharing your story – many others who either need to be empathetic to someone who may be a shut in – but they don’t know why (incontinence stopped my dad going socialising in his later life), or who have similar symptoms and either feel confused and need to see their doctor, or feel alone – understand what is happening. I love hearing your updates – whether it’s about a cunning cows, your Kimberly Aunties, sage advice, your psychic stories or anything to do with you. Some people need to pull their heads in – and maybe keep their advice to themselves unless it’s asked for. You’re the most authentic person I know – thank goodness for you. And being part of your tribe – I want to know what you’re going through, so I can understand you better. Please let us know if there is anything we can do to help in any way xoxoxoxo
Love you long time. xoxoxoxo
I agree that we need to talk about everything. And thanks for the offer of help. What helps me is this – comments and interaction so I know that there is someone out there reading my words and that my words can make a difference. That kind of support helps me feel less alone too, as like your dad I am much more of a shut-i than most people know. Love you too xoxo
Sending big hugs and wee hugs to you Nicole. xx
That totally cracked me up! Thanks lovely Lyn xx
Keep on sharing dear Nicole! Life is not all sparkly, shiny and happy. Why not show that to the world instead only showing an altered version? I firmly believe it gives people strength in knowing they are not the only ones dealing with lives adversaries. Big huge hug to you!
I’m in awe of you Nicole! You are one tough, amazing, beautiful-hearted soul. Sending much love and healing with gratitude and respect xx
Once upon a time I might have been in awe of me too, Ethel. But I’ve found that the truth is we learn to adjust to our circumstances, and we find the strength and humour and compassion within us BECAUSE OF those circumstances. Thanks for the love and healing, which I also send boomeranging back to you xx
Nicole… your words of wisdom, kindness and understanding teach us so much…
Life sometimes is not easy but being empathetic, and non-judgemental, and supportive means sooo much.
You are loved by many of us and as you said …. we all have to wee. 😁😂
Keep on with your great work. Xx 💜
Thanks for your love and support, Jenni. It’s a rare person who manages to get to the end of their life without having experienced some kind of suffering. Sharing helps us know we’re not alone in that place of hardship or pain. (((HUGS)))
Push push. Carry on!!
I shall! Nx
Although we’ve never met, I’m certainly proud to be one of your tribe. Keep sharing Nicole.
We’ve met soul to soul, Anne, and one day hopefully we’ll meet as friends for hugs and cups of tea xx
I have such deep gratitude and respect for you BECAUSE you are so honest, forthright and open (among many other reasons). Thank you for all of your sharing and your realness. I don’t follow people who aren’t. I am so very lucky to be part of your tribe. Thank you, thank yoi, thank you! xxxx
Amy, we’re lucky to have you as part of our tribe. I KNOW how much you get this. Hugs and love xx
Fuck it – let’s make sparkly badges and ignore stupid emails! Lub yew 💗
I lub yew 2 Carly Jay. It has been a privilige to meet you and am so glad you are a good friend to and for Nic. (met you on retreat)
Mary Queen of Hugs! I’ve never forgotten you and would never ❤️
Oh yes!!!!! Lub yew tew xoxoxoxoxoxo
It’s comforting and refreshing to hear that I am not alone in having people say and do inappropriate, unwarranted, uninvited and hurtful things under the guise of being helpful, a friend, or some other lame excuse for their lack of consideration. Truly. I love how real you always are Nicole, and would not follow you or be intrigued by you if you weren’t genuine. LOVE
Laura, I think it’s a common thing – people offering simplistic advice for complex issues. I guess the only thing we can do in such circumstances is hold our ground, be kind, and where possible try to educate. LOVE right back to you xx
It’s really important to be able to talk openly about all “embarrassing “ issues.
I had no idea incontinence was so prevalent. Huge numbers of people experience it then and don’t seek help.
I wrote about getting hearing aids and discovered lots of people also needed them but were in denial. It’s “a sign of old age”. It changed my life.
❤️💜💚🐨
So many of the things you share open the way for others to change, Richard, and that’s what I hope to do too. Also, I’m thrilled that your hearing aids have changed your life! Love you xx
I am honored to be part of your tribe. Many blessings to you. ❤️🙏
And I am honoured that you’ve joined us xx
Dearest Nicole and Tribe
I unapologetically had to laugh at the comment “if you ever get a publishing deal you’ll regret this kind of over-sharing. Trust me.’
Seriously this person doesn’t know you very well Nicole. What do they think your book is about??????? And besides, I am sure your tribe would willing be your publisher.
Keep on sharing you. We love you for exactly that.
Namaste.
Hey, Maxeen. You’re another girlfriend who has managed to stay in that place of grace when life has been hard. You’ll look great in our Tribe T-shirt! Love to you xx
That is the reason we all love you. Your honesty and authenticity!! It is very refreshing and real. Sending you love. Thank you!
Sending big love and hugs your way xx
Does not help to hide, anything, but it is how it’s done. Many share for sympathy or to entrap others in their story of self hatred and anger. I am always happy to share my difficulties in life because it is what makes me a whole human. But like you Nicole I never am asking to be fixed up or given advice. As for pretending to be a clean skin for commerce, I think as a counsellor one is much better of looking a bit undone. Thanks for being you <3 By the way I have heard all these sentiments before 🙂
I’m sure you’ve heard them all and more! I loved that line about looking a bit undone. I can do that! xx
I have suffered with Incontinence for the last 25 years due to a severe spinal cord injury.
I suffered multiple disc ruptures and was paralysed temporarily due to pressure on my spinal cord. The Neurologist said my spinal cord would heal but would remain damaged.
The nerves supplying my bladder were compromised hence my Incontinence.
Never be ashamed of having Incontinence or any health problem for that matter.
I have an Ileostomy due to major complications suffered with Crohn’s Disease so there you have it. Don’t feel sorry for me because I am one of the lucky ones. I am still ALIVE.
You have that warrior spirit alive inside you, peramangkelder, and I honour that spirit in you. It was my Aboriginal Aunties in the Kimberley who taught me that what is inside you is always more important than what is on the outside. How fierce they were, in their strength, kindness and love. I hope to grow into that kind of woman too. Much love to you, Sister Sister xx
Hi Nicole..I love your honesty!what is with people’s obsession with “image”.Not who you really are but what you appear to be?Barking if you ask me.I dont want an instagram view..I want the real deal.love and laughterXxx
Wendy
Wendy, I often despair at how hung up about ‘image’ our society has become. That kind of obsession strips us of our deeper values and robs us of the opportunity to develop and grow in meaningful and satisfying ways. Instead it just makes us more anxious and insecure. Love and laughs right back to you xx
Sending you incontinent greetings – MS induced – luckily I’m part of a loving MS Facebook community where we share about our mishaps. It’s such a relief to have a place where I can be real, thank you for bringing this up so matter of fact – ly, hopefully others can see that it is just a part of life, sometimes frustrating, but hey, the rainbow-farting unicorn can’t be everywhete at once 😉
I think we need the rainbow-farting unicorn as our club mascot! I’m glad you have a safe community where you can be real and swap battle stories. That kind of support makes all the difference. Nxx
Your honesty and truth is what is so inspiring and helps the rest of us to live our truths as well and not hide away from the world. I personally wouldn’t want you any other way. Lots of love and healing to you Nicole. Thank you for always sharing your truth and reminding us all how important that is. xxxx
Peta, truth sets us free. But you know that. Love you xx
Thank you for sharing all you do. It’s all part of life, warts and all. If only more people shared others would feel safe to do so as well and negative attitudes and insecurities about health issues would hopefully fade out. So share away! Much love to you dear Nicole! 😘♥️🌈
Hi Nicole, LOVE your honesty always. There is no shame on sharing… Your tribe loves you no matter what!! Keep sharing and caring…
It’s because of you all and your encouragement that I keep on sharing. I would not be able to do what I do without you. (((HUGS)))
Hi Nicole, I will never unfriend you and you can never share too much. You are sharing what is real and I thank you for that. Sending love from Scotland x x x
Love right back to you from here at the farm, Nicole xx