10 Things *Not* To Say To Someone With Crohn’s:

  1. “Crohn’s is psychosomatic in some countries. Not in England.”  – This is not a good thing to say, especially if you are a Doctor. To insinuate *that* after the trouble and difficulty good old Mr Crohn went through to get this extremely important breakthrough on the map, is a little bit…  cheeky. ;)
  2. “Crohn’s? Ooof that’s bad in’t it?” – Wikipedia is surprisingly accurate most of the time. Use it. ;)
  3. “Get on with it.” – I intend to, but I will reserve the right to do so within my own time-frame. We all need to objectify and dump our worries on the world, especially if like me, you live on your own. Simply saying get over it means something entirely different when a blatant attempt to objectify is taking place. It means sorry, I haven’t got time to deal with your stuff right now. My advice. Don’t say anything then. It’s quicker, and doesn’t leave the afflicted party feeling guilty for objectifying a problem that means a great deal to them. Personally I don’t recall having any “how to deal with medical news” lessons at school. N’ah mean?
  4. “That sounds like a right pain in the arse.” – It is. I get the joke, but it’s really painful. Try laughing after going to the loo and having to fill a small bowl with warm salt water to dip wet wipes into, simply to clean enough to ensure that the blood is removed thoroughly and that infection has been hopefully stemmed yet again for another day.
  5. “Don’t leave it so long to call next time.” – I’ll leave it as long as I need to. My first thought these days isn’t who I have to ring, it’s “ow.” If you ring me, brill, but if I go quiet, I’m probably trying to work out how to flush the loo without giving the game away.
  6. “Oh dear.” – This is the most stupid response ever when it is not joined together with its brother “Sorry to hear that”. – You wouldn’t believe how many people forget simple manners. Simply saying oh dear on its own is patronizing, it’s like saying “there, there”. Please don’t do it. I wouldn’t dream of saying that to you under any circumstances.
  7. “Ooooh. My step-dad’s brother’s auntie’s god-daughter has that.” – Bully for her. And? The real likelihood is that of course you know someone either with Crohn’s or with something you believe to be “like” Crohn’s. This point 7 is particularly relevant to the Kvetch diagram Ring theory pointed out later. Comfort in. Dump out.
  8. “Isn’t that like ME?” – No. Not really. Misconceptions are rife in medicine land. Patients and family and friends alike commonly misinterpret conditions and misunderstand limitations that different conditions place upon people. There’s no such thing as an expert in medicine in my opinion, there are just different people who have seen certain symptoms more often than other people, making them more experienced to recognize them. Doctors are doctors because of what they DON’T know, the most successful of which, don’t assume *anything*, so why should we?
  9. “Sounds like you could use a drink.” – Yes I probably could, but I’m not allowed. Thankfully I don’t miss it too much. If you know a mean chicken broth recipe I’ll nab that though.
  10. “Have you thought about religion?” – Yes. I’m sure they’re all pissing themselves. ;) In all fairness this is an interesting point. Many know me NOT to be a religious person. I’m not. At all. But I’m open-minded. I don’t believe it is correct to declare that one religion holds jurisdiction over any other. All are as valid, and I believe in people believing in whatever they want to believe in. If someone believes that a prayer for me will help, then I’ll blinkin’ well take it. Whether Jehovah or Buddha or no-one shows up is irrelevant to me. The thought behind it is NOT irrelevant. It’s lovely.

*Addendum* italic section updated over time as more worthy candidates come in:

“You don’t look poorly” – Well… You don’t *look* stupid…

“I wish I was as skinny as you” – No. No you don’t. You ignorant prick.

*Addendum/end*

There have been some truly stunning responses that in all honesty will actually help me in the long term, and some indeed that I will remember forever for the right reasons. That, I’m glad to say, is the overwhelming majority. Of course it is. :)

I happen to have a chronic disease that I *hope* to beat into remission enough to live in such a way that allows me to get by just fine. Yeah I’ll need a little help now and again, but I’m under no illusions whatsoever. People are here to genuinely help. I have an army in the closest people to me.

Despite the above being a bit of fun there is a wider point that I am trying to put out there, and it is thanks to yet another wonderful friend “Maz”, who pointed me in the direction of this rather poignant Kvetch diagram and the theories behind it.

If you’re not sure what a kvetch diagram is then feel free to check out the article below:

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

Essentially it is a theory that we gather in circles around those who we love who are are afflicted. If you draw circles around each other progressively with the afflicted in the centre circle, the afflicted closest friends and family are in the 1st outer circle, other friends and family in the next outer circle etc. The rule of the diagram is that comfort is supposed to only travel inwards, meaning that anyone from the furthest outer ring can comfort anyone else on a ring below them. People who progressively get closer to the afflicted earn more right to dump their own concerns, however they ought to dump out, to anyone in a more outer circle than the one they are currently in.

It is a fantastic and thought provoking article in itself, however it raises the inevitable question; would your friends and family draw the same Kvetch diagram for you as you would for yourself?

An interesting thought.

So when it comes to dealing with tricky life-stuff, remember that there are no rights or wrongs but there are some dos and don’ts. Think of it like the London Underground. Nobody *told* you not to walk down the left, but you know not to. Unsaid rules are great. I’m just trying to say a few of ‘em. Why? Because to be honest, life seems too short to me to fuck around getting it wrong.

Advertisements

Getting On With It

A day of answers.

Here’s what I know. The Gastroenterologist is 90% sure I have Crohn’s disease. I’ve had a blood test to confirm and I’m being sent to an IBD (Inflammatory Bowel Disease) specialist to finalise the diagnosis. He said because I have Crohn’s I have developed a severe Psoriasis condition. This is what has been stopping me from being able to walk properly for the last 3 months. I also have two areas of aggressive inflammation in my colon (ileum) which marries up to the Crohn’s and causes me *other* issues. The Psoriasis condition made my skin react and it has been *falling off* certain parts of my body over the last 3 months. I have now been given steroid cream for my skin and I have been referred to a dermatologist, and an IBD medical specialist regarding the Crohn’s. I have also been told I need another operation to help sort the remaining Psoriasis issues.

So now you know.

That’s why nobody has seen me for 3 months, and why I’ve found it so hard to explain what was actually wrong with me. Without that diagnosis, I couldn’t even begin to describe the countless things that are currently going on at the same time, silently crippling me. It’s actually great news in many ways, as I can now concentrate on getting better now I finally know what my enemy is called. Crohn’s is a slightly different nemesis to all who suffer from it. Despite having a lot to research the good news is now I will be able to move on and learn to live alongside it, as so many people do every day. I’ll get the support I need and more importantly, the correct tablets to minimise my particular set of symptoms. The immediate issues can finally get sorted now I have the right meds, and I have the appointments I need on the way to start getting me back to being where I should be. Fit and well and happy. I can’t begin to describe how relieved I feel after yesterday’s appointment.

As before this is not a cry for sympathy, you know me better than that. I just know so many lovely people who simply do not leave me alone and constantly ask about my well-being. It’s so tiresome!! ;) I’m choosing to do this simply to avoid having to repeat the same conversation a hundred times, and I would rather people know the accurate truth than speculate. There are some truly wonderful people I simply couldn’t have got through the last three months without. They know who they are and have been thanked appropriately, but I do also want to thank all my other lovely friends too, simply for giving a shit enough to ask how I am, and for all the amazing support you have shown me. You’ve managed to keep me sane through an incredibly tough time.

Here’s to getting better and to getting on with it.

Ry
xx