s is for sharing your story during urology awareness month 2022 - part 1

Here at @bisforbladder, we recognise that bladder health encompasses a whole host of urological conditions. From retention based disorders to incontinence, we are all part of one big bladder family that, more often than not, isn’t given a voice to be heard. During Urology Awareness Month, September 2022, we teamed up with Hollister Incorporated to give others the voice they so deserve! Thank you to so many of you who shared your stories both with us and with Hollister - we have picked a few to share with you. If you would still like a chance to be featured on Hollister’s page and raise awareness for your urological condition, please click to share your story with Hollister!

Here’s to changing the narrative, here’s to making bladder health mainstream, here’s to change!

Meet Elle

@ellenextdoor

Hey, my name is Elle. I’m a fashion and travel blogger and I have Fowlers Syndrome and Overactive bladder (not the best combo, hey?). I went into retention back in October 2020 and have self-catheterised ever since.

Alongside peeing myself (sporadically and only little bits), I’m currently waiting for an SNS operation which I am utterly terrified for, but keeping the faith that it might make even the tiniest difference. Invisible illness is real, to look at me you’d have no idea of the struggles I face daily!

Fowlers is tough, but so are the incredible ladies that live with it! The future is ours to change and I hope that in time, bladder health is not only spoken about more but treated with more respect and sincerity. Let’s make change happen!

Meet Amy

@myoverenthusiasticbladder

After years of trying to get answers, I was finally diagnosed with an overactive bladder last year. I’ve since been lucky to have a successful SNS (Sacral Nerve Stimulator) trial and now have had the permanent device fitted. I’ve received so much support from the online bladder community (I honestly don’t know where I would be without my bladder buddies), I now want to use my experiences to help others who are embarking on their own SNS journey.

It’s taken me a long time to reach the point that I’m at now and there have been so many tears along the way, but I can finally say that I’m no longer ashamed of my bladder and am a proud owner a successful SNS (or bionic bladder as I like to call it!). There aren’t many people who can say that their bladder is controlled by a mobile phone is there! If you are struggling with bladder problems, I would really encourage you to reach out for support from your GP, family, friends and the wider bladder community via social media – please don’t suffer in silence. I have found that persistence pays off, take the good with the bad and finally, keep on fighting to be heard!

Amy x

Meet Jamie-Leigh

@kennersonjamieleigh

Where to start?! I have had bladder problems for approximately 9 years now. Initially, I was told that I had an over active bladder following prolapse surgeries. I could literally go to the toilet up to 29 times a day. I was offered a Sacral Nerve Stimulator and after a long wait, I finally had one implanted - I am happy to say (unlike most) I had positive results at the start; it really was life changing! Sadly, it only lasted 12 months before the wires became damaged and left me with sever electric shocks, subsequently, the machine was turned off. Post SNS fitting and removal, I was suffered with retention. This was clarified through urodynamic testing and to my surprise, the consultant told me it would only get worse as I got older. I should mention that I’m now 35.

Since then, I have had another two SNS implants; both failed. My care was then relocated and moved to UCLH - a complete game changer! What a difference a change in consultant can make!

UCLH performed news tests which relived the tightening of my urethral muscle, high bladder neck, inflammation and high bladder pressure. A video urodynamics test also showed that the muscles were not contracting properly and I had a negative straining pattern when trying to pass urine.

I used to self catheterise, but it became incredible painful due to the tightening and my quality of life decreased. The hospital said I needed a Supra-pubic catheter. I must warn you, I was not prepared for the adaption. The pain, bladder spasms, constant UTIs…. Thankfully it’s some what manageable now with medication, regular changes and flushes - we’ve found our rhythm!

In July of this year, my consultant said I had 3 options left: bladder botox or two types of reconstruction surgery. August soon came around an with it came a diagnosis of Fowlers syndrome. I finally had a reason for my bladder abnormalities! I tried the bladder botox. Unfortunately, post procedure, I experienced incontinence, bypassing and urgency: it seemed to go from one extreme to the other!

Some happy news - I got married last month only to find that on my honeymoon, full incontinence followed me! Bladder problems don’t pause for you to live your best life let me tell you! My husband nearly spotted my leaking before I did as when I’d stand, I’d be drowned wet! I was so embarrassed! I’d finally built up the confidence to wear a swimsuit abroad on holiday with my SPC and now the leaking was knocking my confidence back to where I’d started! Mentally, it was tough. That’s something we need more support with - although I try, taking a positive approach can be hard!

There are both good days and bad days, sometimes the one one out weigh the other. Chronic pain can be hard to deal with, there are days when I can barely walk. The bloat is real and with leaking comes stinging and rawness of my intimate skin. This month, my doctor has referred me for bladder reconstruction surgery and let me tell you, I’m terrified!

I’ve become really good at hiding my symptoms - chronic illness makes you a professional mood liar. “I’m good, I’m fine” are my usual answers when people ask me how I am doing. Access to professional online support and information is shocking - I could hardly find any! Then I came across @bisforbladder - a professional patient in her own right having suffered with bladder problems since the age of 15 - her helpful and informative stories and posts helped no end. I cannot thank you enough Aoife for sharing your story and useful tips with the world, you strive to help people like me feel included and not alone. Finally, I want to encourage anyone at the beginning at their journey to not give up. Keep shouting out and advocating for yourself. It can be hard to navigate a system like the NHS in it’s current state. We’re told we’re not emergencies unless we’re literally on deaths door but please, don’t let it get to this. Keep calling, keep chasing and keep fighting for you. You deserve it!

With love, Jamie x

Meet Poppy

@poppymayyyx

My name is Poppy and on 5th May 2021, I was rushed into hospital as my bladder stopped working, I was in retention and unable to empty my bladder. The pain was horrific: I felt as though I was about to burst! On the 4th April 2022, I was diagnosed with a neurogenic bladder condition called Fowlers Syndrome meaning I have the inability to empty my bladder. I was unable to walk for a long time and using catheters long term (especially indwelling urethral catheters) made this all the more difficult. I am now working on building up my strength again in order to become more active but this has taken some time and the road back to where I once was seems like a long one.

I have now been fitted with a permanent supra-pubic catheter which will be with me for the rest of my life. Susceptible to infections and experiencing septic attacks, constant bladder irrigations, bypassing catheters and repeated hospital appointments/ admissions make living a near-normal life hard. Everything has changed from my working life to my social life. I am opening up here via @bisforbladder because still in today’s society, many of us are made to feel that talking about life-changing conditions like this is a no-go.

By sharing, I hope to encourage others to do the same without shame. Bladder health and women’s health in general are often overlooked and passed off as ‘stress related.’ This MUST change. I feel that story sharing and speaking openly may just help to make things different for others. We will not be silenced, we will be heard! Nowadays, I am learning to live with my condition and feel like I’m beginning to shine brighter than ever! To anyone struggling, know you are stronger than you realise. Keep pushing forward. Keep fighting!

Meet Lorna

@lornaslifejourney

My name is Lorna and here is my bladder story.

September was urology awareness month and it is estimated that 1 in 2 of us will be affected by a urological condition in our lifetime. There are several different common conditions such as reoccurring UTI's, interstitial cystitis, over active bladder, incontinence. However, like Aoife and Corin who run this page, I suffer with a rarer condition known as Fowler’s Syndrome.

Going into severe retention at the age of 21 and relying on catheters was a very uneasy time for me. It made me feel so isolated and freak-like. Having a urological condition affects your mental health so much and this is just not talked about or supported enough.

Through reaching out online and talking, I have met some amazing people on my journey who have made me feel less alone when chronic health can leave you feeling so vulnerable. By being more open and raising awareness of bladder conditions online, I hope stigma surrounding them decreases and people will be more confident in seeking help knowing that they’re NOT asking too much by asking for help.

Since August 2018, my whole life has changed; my bladder interrupts everything! The worst part of it all is that I had to stop my nursing training due to my health failing me. That absolutely broke me. I took a wrong turn when my mental health declined and I overdosed. My main reason for this was my treatment by healthcare professionals: I wasn’t being listened to. I was told I was making it up for attention or drug seeking. These were dark times. I truly believe that has I been heard, has I been offered mental health support as my body was failing me, had I been truly understood by the people who were meant to have been looking after me, none of this would have happened.

Fast forward to a year on, I finally saw the correct specialists who confirmed I had Fowler’s Syndrome. Hospital has become more frequent than ever as my bladder decides to hold up to 5 litres of fluid inside it before I am drained - absolute agony I can tell you! The most scary part for me was choosing how we would manage my condition. We decided to try the SNS surgery and unfortunately, it hasn’t been as successful as we would have liked. I wish it was a case of, ‘Have this surgery and you will be fixed,’ however that would just be too easy wouldn’t it! Some positives to finish on, I am a lot better equipped mentally for dealing with my future than I was when starting out on this journey. I'm also going to be re-starting my nurse training again in October - imagine the support I can give others knowing what I know now about chronic health and invisible illness! My friends, family and colleagues support is invaluable - it brings about a much needed feeling of hope.

To anyone reading this and struggling, keep being your own cheerleader. Don’t give up!

s is for sharing your story during urology awareness month 2022 - part 2

Meet Sadie

@chronic_pain_and_i

Hey my name is Sadie and I'm a 28 year old woman living in London. Here is my bladder story.

Let me take you back to April 2019. It was a normal day, I’d got up, attended work as usual only today, I was experiencing some stomach discomfort. I went to the bathroom to try and empty my bladder, only to find I couldn't wee. I finished my shift at work and went home to my Mum. By this point I was in agony; I was busting for a wee but still couldn't go. My Mum took me to A&E, by this point we were a bit panicked and I was in quite a lot of pain. I had a bladder scan and it showed I had 2 Litres of urine inside my bladder - I was retaining fluid and not emptying at all. I then had a urethra catheter inserted and was sent home. No guidance, no explanation, no rhyme or reason. I was told I would get an appointment with urology within 2 weeks time for the TWOC clinic - a trial without catheter clinic.

I attended many TWOC's but still couldn't wee. I then saw a urology consultant who seemed to dismiss my problems saying, "I was an anxious young girl and I needed to drink more water". Little did I know, disheartened would be something I would now feel more often than not on my bladder journey. I was then taught how to self catherise. My time ISCing only lasted 3 weeks due the debilitating bladder spasms I experienced - the catheter would actually get stuck in my urethra! We were told I had no choice but to have another urethral catheter inserted - I was left like this for quite some time. Indwelling urethral catheters make it difficult for you to lead a near-normal life: they make even the most mundane tasks difficult, I could barely walk!

Some time later, I received a urodynamic test. This showed I had a ‘high tone non relaxing sphincter’, basically, this was a diagnosis of a condition known as Fowler's Syndrome - the same condition both Aoife (@bisforbladder) and Corin have! I was then sent to another London hospital where my EMG confirmed this diagnosis.

Fast forward to October 2020; because of indwelling urethral catheter complications, I had a Supra-pubic catheter inserted. This has been more comfortable than a urethral catheter but do not be fooled, it does come with its own host of problems. It's been a tough journey so far, I have spent most of my time in hospital due to having kidney infections and varying degrees of sepsis. It's affected my mental health so much!

This year has been a big one - I’ve had my bladder removed and had a Urostomy stoma placed. It's going really well but I’m still getting bad infections and more often than not find myself fighting as an inpatient on a urology ward. To anyone reading this, know there are people like you out there and you don’t have to go through your bladder troubles alone. Women’s health, bladder conditions and rare diseases like Fowler’s Syndrome need to be spoken about more so here I am, sharing my story. I hope this inspires you to reach out, find your tribe and keep on fighting.

Meet Caroline

@quirkeys_ic_journey

Hey there, I’m Caroline and 38 years young! A wife, mum to an amazing eight-year-old son and a fur-mum to our crazy chocolate cockapoo! I also work as a senior marketing and communications specialist. 

My bladder story? Ah, where do I begin?! I would like to say I’ll try and keep it short and sweet, but sadly my bladder journey isn’t, so here it is, queue the chronicles of Caroline’s bladder!

Over the years, I’ve had various diagnoses including Fowler’s Syndrome (like both Aoife and Corin). My current diagnosis is Interstitial cystitis (IC) also know as painful bladder syndrome (PBS), overactive bladder and pelvic floor dysfunction - I’ll leave my gynae history out of this however gynae issues do tend to come hand in hand with a dysfunctional bladder!

Looking back through childhood memories, I realised my bladder journey started sooner than I originally thought! I was that girl that would wet when tickled or would wet when something made me laugh too much. Other symptoms really kicked off after I had an investigative laparoscopy due to a rare condition with my uterus. After this, I found myself in retention. I came home from hospital and found passing urine painful and difficult - I would pass minimal amounts, a teaspoon size if I was lucky, and at times, there was no continuous stream - it was just singular drips! I was swollen and bloated but put that down to the operation I’d just had. At the time, I was staying my my grandparents - I vividly remember calling my Nan upstairs to help me as I was in agony hanging onto the bathroom doorframe in floods of tears. We called the hospital and were told to go to A&E. By this point my tummy was extremely swollen - I even had to explain to the receptionist how I definitely was NOT in labour and that the only thing I could possibly be giving birth to was a full bladder! A bladder scan showed I was in retention and holding two litres so I had to be fitted with an indwelling urethral catheter - I’ll never forget my poor nan’s face whilst she clutched my hand. In the coming weeks, multiple urine infections followed, incessant spasms and the need for various medications to try and control them were what I now grappled with. Fowler’s Syndrome was discussed as I also had polycystic ovaries - common with those who suffer from Fowler’s. 

Over 10 plus years I’ve been under the urology consultants trying various medications, changes in my diet, different procedures - you name it, I’ve tried it! Being in retention, ISCing and indwelling catheters became my was of emptying. I was never shown how to ISC and after bladder botox was unsuccessful, I found myself in unknown territory once again. I don’t get on very well with indwelling catheters as due to spasms, I expel them! I seemed to have an adverse reaction to the bladder botox, I used ISC catheters for up to six months and spent a year on prophylactic antibiotics. It has done and still impacts my daily life profoundly, there were times that I would then be spontaneously bursting for the toilet. I remember interviewing a candidate, she was midway through the interview (doing amazingly I will add) and I had to ask her to pause (sorry if that was you) whilst I darted out the meeting room to the bathroom to catheterise myself! A little while later, I returned and apologised - feeling rather embarrassed! ISCing took some getting used to both mentally and physically! Trying to master it at home, in my workplace and then in public toilets was difficult!

We tried bladder instillations and I was starting to have some luck with these, however, during this time, I fell pregnant with our little miracle so instils had to stop. After delivering my son prematurely by emergency C-section, my symptoms hit an all time high!

I’ve been told by medical professionals over the years, ‘you just need to learn to live with it’, ‘you’ve failed the treatment’, these comments are just not helpful! I didn’t choose to have a bladder illness, it chose me!  

Fast forward to 2019, I was referred to UCLH as my local hospital were unable to offer me anymore solutions. I can no longer ISC or have instils due to the irritation, bleeding and pain it causes to my urethra. I’m still waiting to see this consultant on the NHS - I am chasing this referral daily but the pandemic has delayed this hugely. In the interim, I have had an initial conversation through a private consultation and I have been to see a pain management specialist (again privately). Both of these teams are trying to come up with a plan - I’ve been told a SPC is off the card due to the severity of my bladder spasms. My colleagues are all aware of my bladder condition, but due to the nature of my job I can’t always pause what I am doing to get to the bathroom! We are trialling some news medications - nerve blockers and an SNS surgery are both on the cards however I have reservations about them. A final solution would have to be a Urostomy stoma which would mean undergoing major bladder surgery!

I hope reading about my journey helps you to feel less alone. My words of wisdom—self advocate and don’t be afraid to! Chase, chase, chase! Write your questions down before an appointment, take someone with for support and be sure to paint a real picture of your struggles! Take your time to make decisions - don’t feel rushed! Don’t be afraid to ask for a second opinion! Remember—you know your body and your symptoms best!

My inbox is always open - please don’t suffer in silence, I’m happy to listen! Without the bladder community online, I don’t think I would feel half as empowered as I currently do! Aoife and Corin have been so helpful to me, as I know they are to all their followers! The community they are creating is simply amazing! Together we can make change happen! Invisible illnesses shouldn’t be less of a priority just because we can’t visibly see! 

Lots of Love, Caroline x 

Meet Fiona

@fionashepherdx

My name is Fiona and I’m 25 years old. My bladder problems started after I suffered a stroke at the age of 20. These were dark times - the doctors found a rare kind of blood clot on my brain.

In the years that have followed, I have continued to go in and out of retention - the hospital would insert indwelling catheters to help emptying my bladder. I was then taught to self catheterise, but this became too painful and my quality of life soon diminished. Doctor’s weren’t understanding my symptoms and I experienced medical gaslighting - I felt I was being fobbed me off due to my age! It got to the point where district nurses were coming to me every day - twice daily sometimes - just to catheterise me, but the pain was agonising and I kept getting UTIs which required antibiotics to treat.

After some time, I finally had an appointment with an urology consultant where I felt listened to and he thought that it would be good to have an SPC fitted and have some further tests done. I had my Supra-pubic catheter inserted in June 2022. It hasn’t been easy and I’m still going through difficulties with it! However, it has given me a better quality of life! I’m still awaiting a clear diagnosis, but I’m hopeful that this will change things for me for the better.

My advice to anyone would be; do not be afraid to ask for help, never feel ashamed of who you are - you are not a failure even if your body isn’t playing ball, ask questions and reach out to people who are in a similar position. It’s scary and can be difficult, but don’t let professionals make you doubt your own body - if you think something isn’t right shout loud for help because you deserve it!

Meet Emma

@emmadecort_x

Hi my name is Emma and here is my bladder story.

My symptoms started 10 years ago when I was 16 - I'm now 26 - I never would have thought this is where I would be 10 years later. My bladder journey started when I had my first UTI. I went to see my GP - they prescribed antibiotics, but my symptoms were not improving. Back and forth to the GP I went - more antibiotics were prescribed but nothing improved. Over time, my urine dipstick tests were starting to come back as negative for infection and I was being questioned (or more accused) of possibly having an STI. Nobody was listening to me - I didn't have an STI - there was something wrong with my bladder! I was constantly on the toilet passing tiny amounts of urine in excruciating pain, periods made my symptoms 10 times worse, so I was prescribed contraception to stop my periods all together. I began to notice certain food and drinks made my symptoms worse than ever; I felt crazy as when I said this to the GP it was just laughed off. I was 16. I felt so alone!

After some time and a lot of pushing, I was referred to a urologist. I thought we were finally getting somewhere but when I failed several diagnostic tests, I was discharged back to the care of my GP where the fight began all over again. I was told to have talking therapy and CBT, the GP said it was likely psychological. I refused to believe this! After more pushing, Interstitial Cystitis was diagnosed and I was sent on my way. I still felt this wasn't the correct but being a teenager, and trying to trust in the doctors I tried to accept maybe I was the one with the problem!

Life became more and more difficult, I couldn't go to college or get a job because I was in so much pain and I was deemed lazy by so many.

I picked up my fight again and kept insisting that something wasn’t right until I was finally referred to a consultant in London where I had some urodynamics testing and an EMG done. Fowler’s Syndrome was mentioned, however it took 6 years for a formal diagnosis. I was placed on the waiting list for the SNS.

Post- SNS and SNS Micro surgery, to cut a long story short, I lost the feeling in my leg. After repeated operations, we still don't know if the nerves in my leg will ever recover or if I will ever regain feeling in it again.

In my heart-of-hearts, despite the Fowler’s diagnosis, I still felt something wasn’t right with the conditions I’d been told I had. I still felt they were missing something! After more testing at LUTS in London, December 2020, I was diagnosed with chronic embedded UTI which I had been told had been there for almost 8 years! Relief washed over me - this is what had been there all along! I finally had answers! I was put straight onto long-term antibiotics and Hiprex (which I am still talking nearly 2 years on).

We are still exploring options - this is not the end, like many who experience chronic health problems, there is no cure for what I am experiencing.

Having a chronic, invisible illness is so lonely and so isolating it can really leave you in a dark place. It is misunderstood by both professionals and the people closest to you. People you think will stand by you leave you - you feel like a burden and this can be so overwhelming!

Since seeking help from the chronic illness community online, I have realised that I am not alone. So many like me have had to fight to be heard. If you are reading this and are experiencing anything similar to what I have experienced, keep fighting to be heard. Let’s all join together to raise awareness so we can to stop this happening to others - it shouldn't take years and years to be heard, listened to and diagnosed! Let’s make our medical system work for us!

Meet Anna

@recovering_my_sparkle

Oh gosh, where do I begin with my urology story? I fear these words will be written at the start of most of these bladder bios!

For me, it all started with a pretty nasty kidney infection that I was hospitalised from and just couldn’t shift. I experienced severe retention post infection and catheterised me pretty much straight away using an indwelling urethral– by this point I was screaming in pain, it was horrendous! They drained over 2.5 litres - the relief was indescribable! Not for one second did I think I’d still be talking catheters all these years later.

After I passed my initial TWOC, I was sent home again with instructions to return if needed. All of this was happening a week before I was due to move to university so it was an incredibly stressful time. December 2018, 4 months after all of this began, I woke up and yet again, couldn’t pee. The dread I felt was like nothing I’ve had before - I knew what was coming!

I was catheterised, sent home still in retention, battled through Christmas day and was back into A and E on Boxing day - a Christmas I’ll never forget! Santa gifted me with Urosepsis, I was treated with this and discharged a few days later with a follow up appointment scheduled. This time I went home armed with urology equipment, catheters and such forth with absolutely no clue how to use any of it!

For a year or so we battled on. By March 2019 I had a Fowler’s Syndrome diagnosis confirmed. To hear a doctor say, ‘We don’t think you’ll ever pee again’ was a really hard thing to hear. My mental health had already been on a downward spiral because of my physical health and this only heightened that struggle. I have had an eating disorder diagnosis since I was 14 and the news that my bladder might never recover sent me into a huge relapse. I ended up dropping out of UNI as I was sectioned under the mental health act and spent 8 months in hospital being tube fed against my will. It was absolutely horrible. And the underlying cause for me this time? My bladder!

When I was discharged, I got sent to live in a residential care home for adults with mental health problems – I absolutely hated it because it was such a busy, over stimulating environment for me to be in. During this time, my ability to self-catheterise dropped to non-existent and my body started to reject urethral catheters with spasms, so forcefully, I’d spend hours sat in the bathroom crying. Not ideal when you share it with 8 other people I can tell you! Eventually, it reached the point that the district nurses had to come out and catheterise me twice a day so that I could empty my bladder – this carried on for 5 months until I finally had my SPC surgery! It’s added a whole heap of trauma to my life and has been so incredibly scary.

Since moving in to my own flat (I’ve been here 18 months now which is amazing), my physical health has continued to decline. I found out I have post-sepsis syndrome - this is due to the many septic infections I have now had. My mobility has reduced, my concentration span is limited and my ability to enjoy things has diminished with my pain levels rising rapidly too! Life has been cruel and unkind. I spend my days in bed, have lost most of my hair from stress and medication and most days, I don’t really feel I have a lot to smile about. However, one thing I do try to hold onto is hope. Hope that it won’t always be like this. Hope that better days are coming. Hope that the system I find myself battling will one day change. For now, it’s baby steps. One day at a time. To anyone reading this, who finds themselves in a dark place with bladder health or chronic/invisible health in general, hold on. Keep fighting. Know your worth! You too will recover your sparkle!

Collaborated with Hollister Incorporated post-urology awareness month on October 5th 2022

A blog post for Urology Awareness Month september 2022

S is for sharing your story, the Spoon Theory and supporting one another

Writing this today, in the wake of the dangerous and damning article written by Emma James for the Daily Mail, it feels almost like I am writing a response to a declaration of war waged against some of the most vulnerable in society. How sad!

Emma James, as myself and others online unite with responses to your cynicism and scepticism of the positive, ‘I can’ communities we have tried to create, I sit here bewildered by your ability to find faults in people merely seeking support, speaking their truths and finding their tribe. I sincerely hope that you never experience the pain and grief caused by chronic illness. Your careless words have and will have an adverse impact on the mental health of not just those you write about but also the chronic illness community in general. Maybe, in the future, when writing about such a sensitive topic, you could try stepping into the shoes of those you write about and offer them a voice in your articles.

For now, let me educate you on the positive impact the communities you are so quick to tear down have on others.

Since sharing my story and encouraging others to do the same, I have helped to unite people who have been isolated by their conditions, building a safe space in which they can sound out and share best practice about how they manage their conditions and navigate an able-bodied world with success. Friends and family are great, yes, but how can they possibly understand the pain and suffering caused by rare conditions that they have not experienced? 

Sharing my story has given my pain purpose and has allowed others to feel less alone. It is beyond me how others can even begin to find a negative in this. From where I stand, I see strength in numbers, I see hope, I see unity. 

Sites such as, Stuff That Works - a crowd-sourcing site which gathers information on rare conditions that people experience first-hand would not exist if it wasn’t for people sharing their stories via social media. Social media can be a toxic place; however, I feel that as a community us, ‘spoonies’, have shown the good that social media can do in connecting people far and wide who are in need of a community to belong to.

No one chooses a life of chronic illness – it chooses you. Illness does not discriminate in whom it selects to become a part of its club, it’s a club that any one of us can become a part of at any one time. You can either allow it to make you or break you. Many young women and men living with long-term illness or life-altering disabilities choose to speak up and shout out about their difficult journeys so they can allow their ailments to enable them, not disable them. For me, and for many others, these communities are a vital tool used to help people thrive and not just survive. The good that can and already has come from such communities, in my opinion, far outweighs the bad. So, to anyone reading this who has now been silenced in the wake of Emma James’ article, please, do not lose your voice. Ignore the rage-bait, ignore the fear-mongering created by this article – it was designed to do exactly that, let’s not play into its hands. It is inherently unethical and poorly researched with quotes given that were simply not consensual. I am not saying negative feelings or connections don’t come up because of course they do, but there is so much good research out there that shows how beneficial communities are for those with chronic illnesses and how those who suffer with such ailments use the internet in a way that allows their story sharing to be powerful and to help others - sharing your story allows for a sense of freedom from the binds that chronic illness creates. Keep sharing, keep advocating, keep fighting for your voice to be heard.

Written 11th September 2022

s is for season, reason lifetime

I met a girl when I was travelling. We sat on a beach in Thailand, sipping Chang beer putting the world to rights. She taught me something, a new mantra if you like. Season, reason lifetime.

She said, “Do you know how to make sense of people who come into our lives Aoife? Season, reason lifetime. Season – everyone is in your life for a season. Some stay a long while, some leave after a short time – they are all there for a season. Reason – people come into your life for a reason, to serve a purpose. Some guide you, some teach you a lesson, these are all ‘reason’ people. Lifetime – there are only a few that come into your life and stay forever. You must hold onto these.” Since this conversation, I tend to categorise the people that come into my life without even realising. This post is about a person I believe was gifted to me this week, Jade. Jade came into my life for a reason. The reason? To help my catheter care of course!

I hope you can sense the sheer joy and excitement this blog post is charged with! Something amazing happened today… I was given my very own continence nurse, for the first time in 10 years. We are now Whats’Apping and it feels bloody great!

I had no idea that this was something I was even entitled to! Being young, fairly automatous and independent when it comes to my at home catheter care, I guess I just slipped the net when it came to continence nurse care? I’m not sure how it happened as I am known to district nurses and have had their input regularly over the years but I have always been told that they are there for IV’s and wound care only. They aren’t there for me to call about dressings or talk to about leg bags – ‘they are only to be used in an emergency.’ I have been with the same GP for as long as I can remember, and although they have supported me well over the years, I guess they always just thought I was happy dealing with the day-to-day dramas that catheter life can bring on my own.