You joined me in my life at just four years old. I still remember the day I looked down the toilet bowl and saw a big pool of blood, and even my four year old brain knew you were going to be constant in my life. You were here now for the long haul.
You scared me as a child. I wanted to play like everyone else, but instead you chained me to the bathroom. You made me painstakingly thin, and then the steroids made me huge. Other children noticed. I went on a 8 week liquid diet because of you. I spent Easters and birthdays in hospital because of you. I missed months of school because of you. You literally annihilated my large bowel and with every medication, every treatment, you just got stronger. How the hell did you do that? You had hulk levels of strength and despite the fact literally nobody wanted you around, you persisted. Until my large bowel was at the point of no return. They removed 90% of my colon when I was 12, because of you.
I lived with an ileostomy when I was a teenager, because of you. I felt numb to you then – like you had scooped out my ability to feel and replaced it with a large empty hole. But I became a pro at pushing you away – right to the back of my mind and doing everything I wanted to do. School trips, parties, friends, holidays, activities, boyfriends, exams – I did it all. You didn’t stop me from doing anything, you didn’t hold me back. The problem was though – I still couldn’t talk about you. I didn’t know how to explain you.
I went to university to study drama and it was incredible. I met so many amazing friends, and it was the first time I lived on my own with you. It was harder to keep you a secret when you impact so much of my daily routine – my normal. Because of you I had internal scar tissue – and at uni I had to have two major operations to fix bowel obstructions. I had to talk about you then – I had to explain why I left uni for months on end. And my friends were amazing about you. They didn’t care one bit, didn’t see me any differently. Suddenly I realised NOBODY cared that I had you in my life. I was so much more than you. I wondered why I had lived with the burden of keeping you a secret for so long.
This breakthrough was pretty life changing for me. You were no longer a secret. You were just part of me – as much as I have brown hair and brown eyes.
You have made me so strong.
You have taught me to live in the moment. You have taught me to be compassionate. You have taught me to live one day at a time.
I’ve cried lots of fat salty tears because of you. I have smashed plates in anger because of you. I’ve had parts of my body examined and poked by more healthcare professionals than I wish to count because of you (that is one major downside tbh, why can you only be accessed via the rear?)
But do you know what? I am so proud of you. Well, I’m proud of me. You made me who I am today. You make me, me. I am well aware that we are nowhere near the end of our journey together, but now I know that whatever you hurl in my direction, I can deal with it. I’ve got control over you. How you make me feel. I’m not scared of you anymore. And whilst you will probably try to own me for the rest of my life, you should know you never will.
You are part of me, but you will never own me.
Ps please could I just request one fatigue/pain free day? I think I’ve earned one. Thanks.
A letter to our IBD/gut issues – from you
Today is World IBD Day. To mark the day, I wrote this open letter to my IBD and I asked you guys to get involved too.
I was overwhelmed at the words you sent me – I could relate to every single one of them.
They were honest, relatable and some of them, very very funny.
These are your words to your gut. xo
“You’ve turned my world upside down and you try to beat me almost every day, but I always come back stronger, more resilient and grateful in ways I never thought possible.” @laurenhintonx
“WHY ARE YOU HERE?” @claireharman and @natalia.santacreu
“Can you just behave yourself and not give me any more surprises?” @djfranks1
“I’ve grown as a person and all but why did you feel the need to take my colon?” @billieandersonx
“You make frustrated and anxious at times, but I won’t let you beat me!” @_lottiec
“You suck but you’ve made me, me!” @fayezyfizz
“You are exhausting. You make me angry. I hate you for taking away my old life. You’ve made me kinder. You’ve made me stronger. You’ve made me weaker. You make me so anxious I can’t function. You make me fearful and anxious for the future. Thank you for my scar, it looks awesome. I hate you for what’s behind my scar, my body doesn’t work properly anymore because of you. Thank you for introducing me to the IBD community.” Anon
“We’ve had a tough journey together and although at times I hated you, you have made me who I am today. You have showed me how strong I am, you have enabled me to be more compassionate towards others and you have made me realise what’s important in life. For these things I am grateful.” @clemmiemacphersonnutritionist
“I knew my body so well until you came along.” @vickimg89
“I’m trying to listen to what you’re saying.” @naineos
“Please can you stop being such an attention seeker!” @katiebenhaaam
“You are not going to defeat me. Even when you hospitalise me I’m still going to win.” @ruth.cotton
“It’s given me compassion for others. You never know what’s hidden behind the facade”. @hegoswife
“Calm down angry tum. We’ve got this.” @the.gfg
“Thank you for making me grow up more compassionate and empathetic. Please don’t be passed down to my baby, like how it was passed to me from my mum. And finally thank you for letting me have my baby boy.” @chronically_successful
“Even though some days you suck, you’ve changed me life in good ways not just bad.” @flower.power.xxo
“You gave me strength and a new appreciation for life.” @bhavini44
“I would say ‘let it go, let it gooooooo!'” @tinaambrose87
“Would you just cease and desist so I could get into a decent exercise routine?” @hannah_views
“Thank you for making me appreciate the good times much more!” @clare_the_pear
“You made me strong.” @allyadamsx
“You made me not take life for granted.” @nmonk_ostomy
“I’m in control.” @em.ily_.__
“You are part of me and I accept you.” @gabriellagrees
Thank you so much to every single one of you who sent in such beautiful words and I’m so sorry I couldn’t include them all.
As always I’d love to hear what you think – you an find me on Insta, Twitter or email me firstname.lastname@example.org.
Every single day for the coming weeks I’ll be posting one lovely thing you can do to make yourself feel good as we live through covid-19. I’ll be adding every day to this list so you can check for inspo. In our world right now, we need all the lovely things.
1. Buy yourself a bunch of flowers
2. Make a list of everything you’re grateful when you start the day. It is quite affirming to see it written in black and white (and very therapeutic to write!)
3. Take yourself to some green space – breathe it in and enjoy it
4. Blast out your favourite tunes
5. Eat fresh fruit and veg as much as possible
6. Play a board game or play cards
7. Look at photos that make you happy
8. A good old cup of tea (you can’t go wrong)
9. Find a little place in your home to enjoy the sun – even if that just means sitting by the window
10. Eating meals that make you feel good – from porridge, to pasta to comforting beans and chips!
11. Listen to podcasts
12. Appreciate and enjoy blue skies ☀️
13. Take a bubble bath or a long shower 🛁
14. Read – fiction especially great right now
15. Put together a care package for a friend
16. Meditating and cross stitch
17. Do a yoga class or other virtually
18. Bullet journaling
19. Shop for someone vulnerable or a family member
54. Paint by numbers – you can get amazing canvases and prints you can frame when you’re finished
55. Organise files and photos – do all that filing you’ve been putting off for years
56. Scrapbook! Something I used to do when I was younger but fell out of practice, and now I’m finding my scrapbook groove again. You can scrapbook anything – home or fashion inspiration, photos of family and friends, past trips, ideas for the future – literally anything. I like to use multi coloured felt tip pens and images from magazines.
57. Practice mindful eating – put away all TVs/books/tablets and just savour every mouthful
58. Get creative with card making and send them out to friends and family
59. Go for a run. No expectations and no toxic thoughts if you aren’t at the level you think you should be – just enjoy being out and moving your body.
60. Play a video game and team up with friends to play together too
61. Buy something to support a small or local business
62. If you feel comfortable, treat yourself to a contactless coffee – many small coffee shops are open now for business
63. Buy a book you would never normally read – challenge yourself to consume something different. I’ve been binging a lot of podcasts recently and accumulated a recommended reading list by doing so. Can’t wait to get stuck in!
64. Chocolate covered stuffed dates – an absolute dream! A must try. Recipe can be found on my Instagram here.
65. Take a socially distanced walk with a friend, if you feel comfortable.
66. Take a virtual dance class! These are SO great for getting your endorphins going – there are tonnes on YouTube and some teachers are also offering virtual dance classes.
67. Plan and cook a three course meal for your household. You can even take it turns and make it a home Come Dine With Me experience!
68. Clear out your wardrobe. Have you always wanted to have a good old clear out but never had time? Now is the time! Recycling centres are now open and Depop/eBay/GumTree is too – it’s the perfect time for a declutter.
69. Donate. Many charities are facing extremely hard times at the moment and are struggling for funding. Now is a great time to give something to a charity you believe in/is important to you – every penny counts.
70. Learn something new. Whether it be a language, a subject matter, a specific skill – it’s never too late to learn something new.
Check back every day for new lovely things to keep yourself feeling good and positive! Feel free to contact me via Twitter, Instagram and email for suggestions!
Spoiler alert – you can still have a brilliant career with IBD. Now I’ve said that, hopefully you will know what to expect from this blog article – because guess what, being diagnosed with IBD (or any chronic illness) doesn’t mean you can no longer shoot for the stars and achieve your dream career. It doesn’t mean you have less earning potential and it certainly does NOT mean you are not as brilliant and talented as your colleagues.
Why do I have the authority to say this, you might ask? I’ve been working in the media industry since I was 21, and I have been through plenty of blunders in the process of trying to understand how to make my work and Crohns work together. There is no handbook for this stuff and I didn’t realise how easy I had it at university in terms of being able to manage my workload based on my illness. Of course, I had deadlines and exams, but I could revise from my bed, without anyone questioning it. I could write essays in my PJs, saving energy on getting dressed and commuting. I could dip out lectures if I was poorly, and it didn’t mean I was impacting anyone else apart from myself and I certainly wasn’t losing money doing so.
When I got my first full time job out of university as a receptionist at an animation agency, it was a total shock to the system. Not only was I commuting from my parents into London (an hour and a half each way), I was also working 0830 – 1830 hours. I didn’t know how to tell my manager about my Crohns because I barely understood how it was going to impact me at work myself. It was a struggle, but six years on I have figured out a way to try and make it work.
Before you read on, you should know I absolutely do not have this all figured out. One of the gifts of my industry is it is very fast paced, so moving jobs regularly is normal. It’s a gift because I have had the opportunity to try out multiple work arrangements with no impact on my future employability (because every young journo is doing the same!). After having to tell managers about my Crohns so many times, I think I have finally nailed the conversation about my chronic illness and I’m not scared to ask for what works for me anymore, and that’s what I want to share with you in this blog.
I have always worked and never been afraid of hard work, but I didn’t know how to balance my Crohns until I started work after university. I had my first Saturday job at 16, and always worked throughout the summer at cafes, bars, shops – anywhere that would pay me, basically! I worked as a receptionist after university for 4 months, before I landed my first job in a large news organisation. Getting this job was the first time I had a conversation with any manager ever about my Crohns. I never declared it at my Saturday jobs (I suppose my 18 year old self thought I didn’t need to), but after a brutal 4 months of not telling my workplace at the animation agency, it was clear as day that I needed my managers to be in the loop.
Shortly after I started at the news broadcaster, I had a huge bowel obstruction and needed major abdominal surgery. I was off work for 8 weeks in total and my bosses were absolutely amazing and totally supportive. At this stage, you would have thought I would be able to have the same conversation with my manager when I moved to a new department. But I didn’t. Plagued with feelings that I wouldn’t be seen as good enough (combined with my own imposter syndrome at even being a TV producer), I didn’t tell any managers. I worked shifts for a year and a half full time and it led me into a pit of exhaustion. So much so, I quit. I led myself to a point of complete exhaustion that I couldn’t see the wood from the trees – and I was convinced I didn’t want to be a journalist anymore. I moved into a completely different role in a new organisation, which I convinced was right for me. It wasn’t.
At this point I realised I had to start telling everyone who was involved in my work life about my Crohns. I am extremely fortunate I returned to the same organisation as a freelancer and have since had unbelievable support from every department I have worked in. It took that entire experience for me to realise that if I wanted to make my dreams a reality, I had to be honest and I had to ask for what I wanted. Since then, I have worked a mix of full time, and doing part time when my health was unstable. I am now starting another new role in a different department in a week (at time of writing), and I’ve already told them about my Crohns. It is unbelievable relief for me to be able to do so, and actually helps me perform better at work.
How to have a conversation with your boss about your IBD/chronic illness
From the questions and comments I’ve received in my inbox, this is the thing you guys dread the most! However, I think this tick list will help you prepare for the conversation and how to have it. Honestly after years of avoiding this conversation and now having it seemingly every 6 months, I can promise it is really not as bad as you think! As always would love to hear if you guys have any further tips – so please do message me if you do!
Top tips for dealing with colleagues
Ultimately colleagues don’t need to know the ins and outs of your illness like your manager does, but equally, if your health demands you are absent for recovery or appointments, this may impact them (it certainly works that way in my industry). I have found it best to let my colleagues know they can ask me questions at any time, and I will always explain if someone asks why I was off sick/away. I won’t announce my life story or tell them the ins and outs of Crohns unless they ask, but I will make it clear that it’s not a secret. Equally, don’t feel obliged to share more than you are comfortable with – and if you have concerns, don’t be scared to raise issues with your manager.
Dealing with money worries
It’s all very well me saying go part-time, but we all know that this means a pay-cut and actually, this really isn’t always viable. I think this is why it is so important to establish an open conversation with your manager. If you have a chronic illness, you should also have the right to ask for reasonable adjustments to make your job work for you, which may include flexible working arrangements, like working from home or reducing your hours when your health requires it. To learn more about reasonable adjustment and other options, click here.
What are your rights as an employee?
Many of you, like me, will have really understanding employers who value your work and value YOU. However, if you feel you are being treated unfairly, Crohns and Colitis have brilliant advice here.
Go get it
I really hope this blog has provided some helpful advice for how to cope with managing a career with IBD. The thing is about having a chronic illness is that it makes you question everything, and I firmly believe we should never ignore these questions. Remember that nothing is forever and if it costs you your peace, it’s too expensive. Rethink, re-evaluate and don’t be afraid to ask for what you want.
If you’ve got this far – THANK YOU! As always, please do get in touch with your thoughts – love hearing from you all!