Today’s Spoonie Diaries is being taken over by my fellow ostomate and friend Louise. She blogs about adventures with a chronic illness and is really open, honest and informative about life with a chronic illness.
So, lets get to know Louise!
What is your chronic illness and how did you get your diagnosis?
I have Crohn’s Disease, a form of Inflammatory Bowel Disease or IBD. I began feeling very unwell with a stomach bug – which would later be food poisoning – in August 2011 and never really got better.
Eventually after several close together admissions to hospital, an endoscopy was done and diagnosed with Crohn’s disease.
What was your initial reaction to hearing your diagnosis?
I was really shocked. I had never really been ill before, so it was an unknown thing. I’m pretty sure I laughed because it felt unreal and unbelievable. But I also felt slightly relieved because we knew what it was now.
How much did you know about your chronic illness before you were diagnosed? What was your initial reaction?
My boyfriend at university had Crohn’s disease so it wasn’t completely a mystery to me. He did however really struggle with his illness and required scary emergency surgery which honesty scared me at the time, and when I was diagnosed myself. It felt weird to now know I would know what he went through. I felt guilty and sort of baffled.
What is one thing you’ve learnt from being chronically ill?
Just how strong I can be when I need to. And how I can take most things in my stride.
How did you make the decision to openly discuss your diagnosis and journey being chronically ill? Was it an easy decision to make?
After I came through my diagnosis, I had some counselling to help me process it all. We discussed how I had started a diary while I was an inpatient and I just continued on from there.
In the last six years or so, I’ve become more passionate about sharing my experiences to shed some light on how much IBD can impact daily life, but also how much is involved in living with a chronic illness, in general.
How has being chronically ill affected your life? Have you made major changes?
It made me cautious for a long time. I was scared to get sick again, I was afraid of pushing my body too far and hurting myself, but I came to realise and understand that both fear and caution aren’t my friends – if my illness wants to flare up, it will do.
It has no regard for me, it will do what it wants; what is in its nature. What I do is appreciate the waves – the ebb and flow of just how things can change – and be proactive about communicating problems with my team.
If you could give one piece of advice to someone who has been newly diagnosed, what would you tell them?
Take it one day at a time and please don’t believe everything you read, at first glance.
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?
Mostly definitely. The mental aspect of living with a chronic illness is massively underappreciated and undervalued as part of physical health problems.
I wish we had better and more access to mental health professionals who understand trauma and grief because both of those things happen a lot throughout the journey with chronic illness.
What do you wish your friends and family knew/understood about your illness/disability?
That sometimes I do just wish I didn’t have it, to have a day without something being wrong. Or at least more days where I am more comfortable with it all.
Finally, what does chronically living mean to you? Do you have any advice for readers going through similar things?
Chronically living is doing the best for you, as you live and function with an incurable illness. This does not make you a burden or different to others; it is just a part of you. You choose what to share and what not to. You are never alone in whatever journey you might have along the way.
A massive thanks to Louise for taking over the Spoonie Diaries! Don’t forget to check out her blog and follow her on Instagram too! Want to be involved in The Spoonie Diaries? Send me an email at hello@ktmy.co.uk
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