Being diagnosed with IBD – is not exactly the type of news you want to hear! Big sweeping terms from the specialist like:
‘we don’t know what causes IBD…’
‘we don’t know how you personally got IBD…’
‘but, it’s for life…’
‘it can be serious…’
‘or not so serious…’
‘and, we don’t have a cure…’
All this is swimming around in your head, as you’re feeling a bit overwhelmed from the colonoscopy you just had…. (I mean – what was that?! ….They put a camera…where?!?)
So being as adult and in control of this scenario as possible, we usually try to handle news as bravely as possible and respond to the doctor with…
‘OK….right…sure….so, what do I do now?’
When I was first diagnosed – I was 13 years old – having returned from a holiday in Vanuatu with my folks – we all had food poisoning, unfortunately – I got worse, and the doctors couldn’t seem to put their finger on why I was so ill and losing so much weight. They performed a colonoscopy – and turned out Crohn’s disease was active in my body.
That was overwhelming news. To hear I had Crohn’s (whatever that was..) but I had it! And for life?!
I think being that age – we are enormously resilient and so, so strong! We can take things on the chin, just get through, and desperately aim to return to the normal life.
The challenge is of course, coming to terms with and accepting that you have IBD – especially with the weight of knowing it’s a permanent condition – means – life is now a bit different from the norm.
Like have mentioned before, in denial ain’t just a river in Egypt – IBD can be an easy thing to sweep under the rug – as IBD usually doesn’t present itself on the outside – so sometimes we can even convince ourselves to a certain extent, that we are ok! Put on some lip gloss, tie your hair back, sport your favourite pair of boots – I mean who would know right?!
Also – as a young adult, heck even as a ripe adult;) we want to charge through life! Kick ass! Do what we want! Study, work, go out, exercise (maybe…), enjoy life, create, make goals, and surpass them! Yeah to be honest – I don’t think that desire to live life how we want to – ever changes:)
The challenge however living with IBD – is we have to monitor ourselves, now so totally, to keep the disease in check as much as we can. Because – essentially – a decent level of health is everything. And IBD can exacerbate quickly. If we don’t look after ourselves as completely as possible – we consequently, may not be able to do much at all.
It has taken me many many years (about 18 years tbh) to come to terms with putting myself and health first! And I still find it a challenge!!! Because, I still want to do it all:)
But – having experienced the surgeries and living with an ileostomy bag – I know how serious and potentially life threatening this disease can be, if we push ourselves too hard – and try to ‘beat’ this disease. Or ‘ignore’ the disease. IBD can quickly come out on top.
Sucks but true.
It’s a hard balance I believe – acknowledging the disease so totally – and also wanting to live as you want to live!
I see a lot of people kicking ass with IBD! Which is awesome! However sometimes I wish people would take it easy on themselves too – knowing their condition – and I don’t think there is any shame in taking a step back, to put your health first!
I may see Instagram posts for instance – IBD ‘warriors’ (not sure if I love that term – cause I feel it encourages battling life potentilly at the cost of your own health…but anyway) They may be doing a spin class, then jumping on a plane to go to a friend’s wedding for the weekend, all the while studying their degree while working full-time, socially commited throughout the week…etc… and they also mention how totally exhausted they are battling IBD and feeling quite unwell and symptomatic. #crohnswarrior #kickingass #IBDisgoingtokickyourassifyoudontslowdown
So – sometimes I want to yell out – stop, please! Look after you!!!
We can do it all – we can! But we may also have to put ourselves completely first at times too, to look after our health. There also can be very life changing repercussions while living with IBD – so I believe in minimising that risk as much as possible. Personally, after my journey with Crohn’s and seeing how bad it can get – I don’t want to go back there. So now – I say no to plans if I am too exhausted, I have to scale back on what I want to do – as I know now what can exhaust me. And being totally exhausted, is not healthy – especially for someone with IBD. For me – running myself down – is usually followed by a Crohn’s flare up. And I don’t need or want that, and will avoid it at all costs.
Being diagnosed – sucks completely. But! It can be manageable. We just really have to listen to ourselves, and follow-up consistently with the doctors.
And TALK about it!
What helps me to continue to come to terms with living with IBD – because it is an ongoing journey – is talking about it, trying to own it as much as possible, and reading other people’s stories. I love the fact that people are now talking about life with IBD:) makes me so happy! Years and years ago – I doubt people would have had the courage to even mention it to dear friends – because they felt such a stigma around bowel disease. I know I felt the stigma – developed a talent for skating around the subject, making a joke – and changing the topic;)
Much love out there to those living with IBD and those newly diagnosed.
Thank you for reading – and thank you too to the IBD community, it has helped me come to terms, to be open and to accept. It is an ongoing journey living with IBD, and knowing we have this community – is enormously helpful, and couldn’t be more grateful.
Having a flare up right now..no one would know, but I do!
Therefore – self care and monitoring is essential!