To tell, or not to tell?

I listened to a very moving documentary at the weekend about a young woman on the kidney transplant list. She described the nature of her illness in a way that I really identified with; spending days in pain, but trying so much to be normal. She spoke of kidney disease as a silent illness, and in a sense it was a blessing that everywhere she went, nobody knew she was sick. But it was also a curse- because nobody understood how sick she felt.


One thing I have debated a lot is the decision- to tell, or not to tell...

This decision is a very personal one; it varies from person to person. I have read stories where it is one persons little secret, another person will shout it to the world, unafraid.
Im in between- not ashamed to say it, but not willing to advertise.

You see, telling no-one can be a lonely road- and I found it hard to state 'I don't drink beer', telling one friend that im not going to another friends house (because i worry about the uncleanliness all of a sudden), I had new list of things I would and wouldn't do... To be honest it made me sound grumpy.

 Days after Infliximab; wandering around sleepy and headachey- that kinda sucks when people tell you to pull yourself together and go have some fun (because they think you're depressed, not tired). My friends are all young, only three have settled down like me- so you can imagine their lifestyles' are without the worries of older, or sick people. And diet isn't so great either- or had I just become a snob to refuse 15 cent noodles for dinner... I guess it made me feel better to be honest, if it came up.

It did make some people uncomfortable knowing I had a bowel condition, and others now tell me all about their toilet habits (not that i ask, or tell them).. or ask whats normal (as if I'd know!!)
I'm lucky to have friends, who although will not push the boundaires of what I can and cant do/ they also still see me as me. As I mentioned before, I've always been a sicky person- now it just has a name.

Of course- the decision to be open has its major downsides too- some people cant quite accept it. When i first told my father (perhaps this says more about character than anything, but beware-) he insisted I did this to myself. Thanks dad. Apparently it was all that anorexic business that made me sick. I lost weight because I was sick.

Then theres the overly fascinated, its not their fault- but they can only see you with a giant stamp of IBD on your forehead. After telling someone over lunch once, they asked 'should you be eating that?' every ache and pain nearly had them calling out for a doctor. Everytime I do something I hear "should you be doing that?". If I got pale they would constantly hound me, try supply me with endless cures... but the worst of this was they still werent exactly sure what crohns is. This means I was terminal in their eyes, and it was miracle I was walking around, acting so normal...

I also know a few people who just love having a sick friend- I think it makes them feel good when they spread news about me being poorly and how much they tried to help... desipte their being no heart in the help as I clearly stated I was fine!

It really is an individual descion, and down to who you choose to tell. But there is nothing to be ashamed of, and you need not suffer completely in silence.

I know that its hard for someone who isn't sick to grasp how you feel.
My boyfriend has often rolled his eyes when i announce "I feel like crap"... he'll reply "What's new?"... This can make me feel a bit deflated.
But on the other hand- he's held my hand and put up with my drugged up mood swings everytime I've ended up in hopsital.
And despite being a pretty squeamish person- all this bowel business doesn't make me less attactive, apparently. Most stories I have read about it was women who couldnt stand their partners knowing about fistulas or that they get diarrhea- I think people should accept you the way you are. I have a leaking fistula; it makes me feel far from sexy.. But- it's my battle scar, we all get them; nobody goes through life without ever having a few battles.
I guess there are points where we will be alone with this disease- but how is that different from the life of a healthy person? We are all alone sometimes- thats just a fact of life.
I recommend the spoon theory for explaining to anyone what life is like with a chronic illness.