Part of the week of daily blogs for #crohnsandcolitisawarenessweek
“When they said chronic I didn’t think. They meant every single damn day.”
Chronic and invisible. Double whammy.
Despite there being so much information out there about the basics of IBD, we as patients still experience misconceptions and misinformation throughout our patient journey.
For some this can be the fact that at a primary level, IBD is confused with IBS. And whilst yes they both are located within the digestive system, that is the end of the similarities. I’ve written about this before, here.
If we can get past that hurdle, there is the fact that IBD is largely invisible. It all happens inside; some where only medical professionals go and understand because of training. Others don’t feel our pain, don’t understand our embarrassment about not being able to get out of the bathroom, about leaving home, going to work, speaking about this in public. We deal with a multitude of symptoms which need monitoring. We have needs, some of which are met by fantastic consultants, IBD nurses and surgeons. But for the most part; fighting for appropriate care and understand is sometimes hard in the beginning. It becomes easier as you progress further; when you know what to ‘expect’ and what to ask, seek out for yourself. It is tough at times.
And it can get to you; the fact that sometimes most of what you experience is because of IBD trying to sneak in elsewhere. In your liver, on your skin, in your eyes, through your joints – it is enough to make anyone abit anxious. Let alone depressed. Having a mental health problem with IBD is becomes more common; mostly because it’s being talked about more and taken seriously. Not being believed or taken seriously has a knock on effect and this can taint you for months and years to follow.
Some days its easier to hide your invisible illness than other days. No two days are the same and this is hardly understood because from the outside, we don’t look different. But well feel different. Greatly.
From explaining why you are tired – because you have fatigue from your illness being active or a medication side effect – or trying to explain why you’re not eating this or that – they don’t have to deal with the outcome! – it is exhausting. It’s a little wonder why sometimes misconceptions continue because it’s exhausting trying to educate others when your disease is active and you are dealing with that. Add on everything else in life; it because stressful, overwhelming and very isolating at times.
And when it comes to surgery – we get told we are too young to have surgery, to need and choose stomas over the alternative. For some, the alternative is death; so a bag of poop on your belly is a small price to pay. But that is not to overlook just how much stigma and misinformation there is about stomas. I get told I am too young to want to choose a bag for life, instead of reconnecting my bowel. However, they have not been there for the appointments when discussions about quality of life and options have been front and centre. It is not something I should have to deal with as a 30-year-old – deciding on my body for the next 60 years, but this for me is my choice and the lesser of two evils. And who is to say that surgery can’t improve quality of life in the long run?
I think most misconceptions and misinformation comes from judgement. From the fact others can’t see my pain or feel it, means that what they see is what is real. That’s certainly not true.
“Everyone you met is fighting a battle you know nothing about. Be kind, always.”
What is great though is how many people stand with us to help ease some of this misinformation. They fight our educational battle for us at times. And whilst they present IBD in one way, advocates do this in a different way. Both have value, both are sources of information and experience. Neither should be without the other.
Do you have any questions or queries? Or just want to share your own experiences? You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram
InflammatoryBowelDisease.net – Invisible Illness: A Blessing and a Curse
VeganOstomy – Busting IBD Misinformation