Crohn's Disease has been big(ish) news in the last couple of weeks. Certainly in the UK at least. The recent diagnosis of a reality TV show star has been splashed all over the papers with great gusto. It's been strange and vaguely exciting to see Crohn's being spoken about in the press. It's such an 'embarrassing' condition as a rule ,that it rarely gets it's time to shine in the spotlight.
Any awareness of this still widely unknown illness is of course, absolutely brilliant, but what happens when these stories become more damaging than helpful? How do you stem the tide of panic when false reporting can cause so much upset?
For me, in the week since this 'celebrity diagnosis' became a newsworthy, I've had to comfort friends who have been left feeling ashamed at not understanding the full extent of my condition. Worse than that, I've had to hear my Dad in tears thinking his daughter is potentially losing her life.
Now understandably, the public take their news from whichever sources they can - whatever is fed to us we generally lap up like hungry kittens without too much thought to whether or not it is wholly accurate. That doesn't make it ok, it's just human behaviour. But when these articles are incorrect and/or misleading it can be difficult to overturn these opinions.
My friends and family have felt from reading these stories that I've been keeping information back and not expressing the full and DIRE consequences of my illness. This isn't the case. Of course I do hold some things back - like the fact that I feel 99% rubbish 99% of everyday for example - because why would I want everyone I love to feel miserable due to something outwith my control? Crohn's is MY condition and happening to MY body so I don't want to waste the time I have in complaining about every aspect of my seemingly failing and geriatric body.
When symptoms/causes/outcomes of life with Crohn's are reported in the public domain it can be quite hard to deal with. It feels a bit like batting away a pesky fly when people start telling me what I have to deal with. I am knowledgeable on my illness because I have to be. I have to learn what my body can and can't tolerate because I want to get better. I want to help my doctors as best I can to get me to a point where I can manage my illness as effectively possible.
Where Crohn's is concerned knowledge is power. News and information are invaluable to gaining a wider understanding and acceptance of the condition. Knowing what your loved ones cope with on a daily basis is incredibly helpful in attempting to grasp the struggles faced by sufferers. Please ask us. We are not ashamed and not embarrassed - you shouldn't be either. Educate yourself but be wary when faced with horror stories. We have enough of those in our own bathrooms on a daily basis.