Why I'm Asking Those With IBD to Take It Easy on Themselves


I’ve got what?!

Being diagnosed with IBD is not exactly the type of news you want to hear! I heard 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…”

“…Yet.”

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 it turned out Crohn’s disease was active in my body. That was overwhelming news. To hear not only that I had Crohn’s (whatever that was) but that I had it…for life?!

I think at 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. This means life is now a bit different from the norm.

Like I have mentioned before, IBD can be an easy thing to sweep under the rug as it doesn’t usually present itself on the outside. 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 favorite pair of boots… I mean, who would know, right?

Also, as a young adult (heck, even as a ripe adult!) I wanted to charge through life! Kick ass! Do what I 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, in 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 can be everything. And IBD can be exacerbated quickly. If we don’t look after ourselves as completely as possible, we consequently may not be able to do much at all. So hard!

It has taken me many, many years (about 18 years, to be honest) 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 three 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.

It sucks, but it’s 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, from IBD “warriors.” (I’m not sure if I love that term. I feel it could encourage battling life potentially at the cost of your own health.) 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 for their degree while working full-time, socially committed throughout the week, etc. And they also mention how totally exhausted they are battling IBD and feel quite unwell and symptomatic.

So sometimes I want to yell out, “Stop, please! Look after yourself!”

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 can also be very life-changing repercussions while living with IBD – so I believe in minimizing 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 and 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. It 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. I developed a talent for skating around the subject, making jokes 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 or any chronic illness, and knowing we have a community is enormously helpful. I couldn’t be more grateful.

With love,
Sylvia

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Jupiterimages.


Find this story helpful? Share it with someone you care about.


Related to Crohn's Disease

Water colored woman walking through forest.

Why I'm Forgiving the People Who Mocked Me Before My Diagnosis

“There’s something wrong with you.” “This isn’t normal.” “Seriously. Why are you acting like this? What’s wrong with you?” “You shouldn’t be behaving like this at your age.” Sound familiar? If you’re a young person who was showing symptoms of a chronic illness several years before actually being diagnosed, it probably does. For several years [...]
young girl sitting in a hospital bed with a stuffed animal

To My Younger Self Who Was Just Diagnosed With Crohn's Disease

Dear younger me, I know you’re scared and this past week in the hospital has not been all that great. All the tests and doctors are so new to you. The doctors said you have Crohn’s disease. It’s going to be OK, I promise. I wish I could tell you these next few years will [...]
watercolor portrait of woman's face with hair blowing

Why I Refuse to Hide My Illnesses After Being Called an 'Attention Whore'

Being someone with a chronic illness in any case is hard, especially being in public and having people stare, make comments, or ask you the same questions you always get. For me, I get “What’s that tube going down your nose?” or “How do you have cancer, and all your hair?” Many chronically ill people face these questions. However, they are [...]
Commercially Grown Cannabis Indica

When I Tried Cannabis to Manage My Crohn's Disease Symptoms

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional. It took me three years to accept the fact that my Crohn’s disease was never going to go away. In that three years I did a lot of things, both medical and holistic in the hopes [...]