I am so excited to have Bryony take over the Spoonie Diaries this week! I’ve followed Bryony for a long time now and always blown away by her positivity, but also how real she is about life with IBD.
Bryony really shows that you can still thrive with a chronic illness! This weeks interview is really interesting, as Bryony has had Crohn’s from a very young age and it’s really interesting to see the differences compared people diagnosed older, and not had their chronicHow did you make the decision to openly discuss your diagnosis and journey being chronically ill? Was it an easy decision to make? illnesses for as long!
You’re going to LOVE this weeks interview, so let’s get to know Bryony!
What is your chronic illness and how did you get your diagnosis?
I was diagnosed with Crohns Disease at the age of four years old, so the process of getting a diagnosis is a bit of a blur now I’m in my late twenties!
Things came to a head for me when I was on a family holiday in Wales. I don’t remember much about my symptoms, but I do remember one day looking down the toilet bowl and seeing bright red blood. I called my Mum and was taken straight to hospital in Wales – where everything happened extremely quickly after that.
I spent the rest of the holiday in the hospital, before coming home and immediately transferred to a specialist pediatric gastro hospital close to home.
It was at this hospital I received a diagnosis of Crohn’s Disease. Crohn’s Disease is a form of Inflammatory Bowel Disease, and it basically means my digestive system attacks itself causing severe ulceration, inflammation and bleeding.
What was your initial reaction to hearing your diagnosis?
In all honesty because I was so young, I really don’t remember what I thought about it.
I’m sure it was a much bigger shock to my parents than me, as my childhood went on to be pretty much totally dictated by my Crohn’s Disease.
It was very clear quite early on that I had quite an aggressive form of the disease.
How much did you know about your chronic illness before you were diagnosed? What was your initial reaction?
I don’t think anyone knew anything about IBD when I was diagnosed – it wasn’t prevalent in my family at all at that time (interestingly, we do now have a few cases of IBD in the family).
As a family unit it was very much about dealing with it together and I am so unbelievably grateful to my family for that, as I was so young I really couldn’t have navigated it alone.
In the time I’ve had Crohn’s, I’ve had more meds than I can count, 6 major abdominal operations and a few other minor ones. I’ve lived with an ileostomy, I’ve done the elemental liquid diet, I’ve had abscesses drained and with every new obstacle, my support network is there. I think that is so incredibly important when you have something as unpredictable as IBD.
What is one thing you’ve learnt from being chronically ill?
Oh such a great question! I think the main thing I have learnt is how important it is to live in the present.
I know it sounds cliché, but my Crohns has always come hurtling around the corner when I least expect it and I have spent many years worrying about what might happen next.
By worrying I am giving my Crohns even more control that it already has and worrying does absolutely nothing to help or change the course my IBD will take.
Since I’ve reached my twenties I’ve very much lived the motto ‘take every day as it comes’ and it’s massively changed the way I see the world, and the way I live my life. It’s so true that worrying does not take away tomorrow’s troubles; it just takes away today’s peace.
How did you make the decision to openly discuss your diagnosis and journey being chronically ill? Was it an easy decision to make?
I first started my blog back in 2016 when I was on the elemental liquid diet, and I wanted an outlet for what I was going through (and also something to do when I was supposed to be eating!!)
I was blown away by the reaction, and I eventually wrote a long piece for World IBD Day, which got published in the Huffington Post. It was the first time I had ever spoken publicly about it, and the first time many of my peers and colleagues found out I had IBD.
I had been living with my Crohns as a secret for so many years, including the years I had an ileostomy as a teenager… I just didn’t know how to talk about it.
To talk about it openly was a massive weight off my shoulders and it’s been amazing to connect with so many others in the same situation.
I am so lucky in my line of work as a journalist I have the opportunity to write about it and reach more people, and I hope this is something I can continue in the future.
How has being chronically ill affected your life? Have you made major changes?
It’s funny because even though I don’t always acknowledge it, my Crohns has impacted almost every decision I’ve made in my life.
Lots of small things – like ALWAYS being aware of where the toilets are, booking an aisle seat on a plane, making sure my employer is understanding of my Crohns, going part-time when I’m unwell, living somewhere which isn’t far from work so it doesn’t take up too much energy… the list goes on!
One of the biggest changes I’ve made is going gluten and dairy-free since 2016 – I experience lots of bloating which is more of an IBS type symptom on top of my Crohns and cutting out these food groups has massively helped.
If you could give one piece of advice to someone who has been newly diagnosed, what would you tell them?
I would say it’s okay to be scared, it’s okay to feel overwhelmed and it’s okay to ask questions and speak to others in the same situation.
It’s important to take time to understand your diagnosis, and not to rush it.
As someone who has had Crohn’s for the majority of my life, I would say my biggest piece of advice is that you can still do anything. Things may be a little trickier, you may have to deal with some obstacles, but anything is possible.
You can still work, travel, socialize, have a family – anything else you want to do, it’s all possible. It’s mainly about adapting all of the above to work with your IBD.
Do you think your physical health has impacted your mental health? Have you ever sought help for it and do you have any coping mechanisms?
Yes my physical health has 100% impacted my mental health and I definitely don’t think it’s discussed enough.
I have recently just finished a course of therapy and it is something I’ve had previously too. Given how unpredictable and sometimes life-changing chronic illness can be, I think it’s only natural it has an impact on our mental health and I really think mental health support is something that should be in place alongside physical treatment.
In terms of my own personal coping mechanisms, I always talk about how I’m feeling with those closest to me and this is so unbelievably important for me to get my feelings out and to deal with them. I also practice yoga which I use when I’m feeling anxious, as well as writing down how I’m feeling.
Essentially for me, it’s about getting them out, rather than keeping them locked in.
What do you wish your friends and family knew/understood about your illness/disability?
I am so lucky that I have an amazing support network that I can be super honest with, so they are amazingly understanding when it comes to my Crohns.
One of the hardest things I still find is explaining, in general, is my fatigue, which is pretty constant even when I’m in remission. I’ve learnt over the years it’s best to be honest about when I’m too tired rather than make up excuses.
Finally, what does chronically living mean to you? Do you have any advice for readers going through similar things?
One of the best things my Mum ever said to me was ‘your Crohns will always be part of you, just make sure it’s running beside you rather than taking over you’ and I think this is such good advice.
Our chronic illnesses are part of us, they always will be, they make us who we are. I certainly think my Crohns has shaped a huge amount of my personality, but I am also many more things.
I’m a partner, daughter, sister, friend, journalist, foodie – and I am chronically ill. I think it’s important to remember that living the life you want to live, whatever that is and having a chronic illness are not mutually exclusive. You can have and do both!
A massive thank you to Bryony for taking over The Spoonie Diaries! Make sure you’re following Bryony on Instagram and check out her blog, abellyfullof.com. Do you want to take over The Spoonie Diaries? Get in touch at hello@ktmy.co.uk
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