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Crohn's Disease
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Posted 7/7/2014 7:51 PM (GMT 0)
I found this list of 12 things NOT to say to someone with a chronic illness. We've all had annoying/dumb/insensitive things said to us concerning our chronic illnesses. I know it's hard to know what to say sometimes.

http://www.healthline.com/health-news/ms-12-things-not-to-say-022814



Do you have a doozy that you've "received" from someone?

<edit>  I hotwired your link.

 

Post Edited By Moderator (stkitt) : 7/8/2014 10:37:34 AM (GMT-6)

Posted 7/7/2014 9:52 PM (GMT 0)
I agree with and have been told most of those things one time or another. I just try to smile and say uh-huh. I get “I’m sorry” A LOT. I just say “me too.” What else is there to say? Also, “feel better soon.” My auto response to that is, “maybe someday.”
The “You don’t look sick” one is killer. Last year my family took an NZ/AU cruise. We landed in Auckland, NZ for a few days in town before we left on the cruise. It was a lengthy trip and I packed my full 50 pounds into that suitcase! My suitcase was too heavy for me to lift- my surgeon told me not to lift things heavier than like 20 lbs to avoid strain and stomal hernia. For the most part, I just wheel it around and the weight is no biggie. Otherwise, I had been relying on my husband to help me if the case needed to be lifted.
Once we landed in the Auckland airport, we headed towards the baggage claim. We got our bags, my husband lifting my suitcase off the carousel for me. Then we headed to customs. At that point, I got sidetracked by the uber adorable drug/contraband sniffing Beagles they use at the gates and got separated from the rest of my pack. I made it to the customs scanners after my husband had passed through. Oops! Travelers have to lift their bags onto the scanner to they can pass through the x-rays. Next to each line there was a large sign stating that airport employees are happy to help the elderly or disabled lift their items. I called over an airport employee and asked for help with my large suitcase. He looked me up and down and said, “Why?” I pointed to the sign and stated that I needed help. He said, “You look fine…what’s wrong with you?” I said I was disabled. He then proceeded to ask what my disability was as if I was lying! I said it was none of his business and then asked if he was going to help or not. He sighed the sigh of a perturbed 15 year old- you know, that “Oh my gawd, I’m watching TV. I’ll pretend to care later!!” sigh and lifted the bag for me. Ick. That guy made me so mad. Luckily, the trip was amazing and otherwise incident free until the Sydney version of TSA found ostomy scissors in my luggage as we were leaving the country for home (California). Apparently, Australia doesn’t make exceptions for medical device related scissors and still considers them weapons. Good thing we got to the airport extra early as that was an hour long fight to get to keep them!
Posted 7/7/2014 10:11 PM (GMT 0)
Oh, that's definitely a doozy!

I have to admit, and anyone reading my posts can attest, that I do say, "I'm sorry about you illness". I guess I consider that to be an empathetic response and I'm not bothered by it. It may be a Southerner thing in my case. But now that I know it's a no-no I guess I'll have to change my ways.
Posted 7/8/2014 2:19 AM (GMT 0)
I really don't mind the "I'm sorry" comments either. It is just someone trying to be empathetic, so I don't really find that so bothersome. I was at my book club last week and I was sharing my worries about my daughter. One of the women said,"No wonder you have Crohn's...you worry too much." And this lady's wife is a doctor! I just got quiet and didn't bother to respond. The worry comments, the weight comments and the diet advice, all push my buttons big time.
Posted 7/8/2014 2:17 PM (GMT 0)
I am not really bothered by the I'm sorry one either....I always figure that was the least offensive thing they could say. I do hate those that offer the easy solution (like in 20+ years I would not have tried to find a solution)....but it is the worst when it comes from my family that have IBD issues.

Worse than "you look great you can't be sick" is..."But you're too fat to have a serious disease". Yup I actually was told that---more than once. My response was different for the people that said it. The trying to be caring, but failing person got a real basic explanation of why I still gain weight. The really rude person got "but I'm not too fat to punch you in the nose".

It's all situational for me....some folks really are trying...I have to remind myself of that daily since I know I say things that don't come out like I wished.
Posted 7/8/2014 2:45 PM (GMT 0)
I don't mind "I'm sorry" either, I just don't know any other way to respond.
Posted 7/8/2014 4:42 PM (GMT 0)
Ohmigoodness, yes to the "you've lost weight, you look great!" comments.
There was an incident a few months ago when my dad was teasing my 22-year-old cousin about taking the last cookie, instead of giving it to him. What came out of his mouth was "I'm just looking out for your girlish figure, look at my daughter and how thin she is."

Other comments I find annoying?
"You mean you're going to have this for the rest of your life?" Yeah, so most people in their late 20s don't have longterm health issues. I do.

"I was misdiagnosed with Crohn's years ago, I know what you're going through. And are you really sure it's Crohn's?" That sucks, but my diagnosis included textbook symptoms (including joints so swollen I could barely walk, night sweats, stabbing back pain, and more) and a stool sample, weeks of bloodwork, a colonoscopy & biopsy, and small-bowel followthrough. Sorry your doc wasn't as thorough. And it's nice that you quit taking your meds because of side effects- I tried stopping my meds once, and about 3 months later, I felt like I was dying.

"We're praying for your complete healing" or "Why don't we all lay hands on you and pray that God will heal you?" Yes, I believe in divine healing- but I believe it's the exception for God to interfere with the natural process of a disease, not the norm. And God uses modern medicine! Maybe pray for a cure to be found or better treatment options instead? (Also, depending on context, this can imply that taking maintenance medication is a lack of faith in God).

"Don't you know medicine is poison? Food and exercise will cure anything." Food and exercise help- a lot. But still not enough. Weeks before I was diagnosed I was eating a low-fat vegetarian diet and walking a mile every day. That's not terribly radical, but it's more than a lot of people who *don't* have a chronic illness do. And it didn't keep me from getting sick.

Okay. I'm going to need to take some deep breaths now.
Posted 7/8/2014 8:02 PM (GMT 0)
Thanks for the personal experiences. I sometimes feel like I'm the only one with a target on my back that says, "Go ahead, say something that will make me feel lower/dumber than I already do". And it's usually someone I'm related to or go to church with that gets under my skin the most.

I've noticed as I've gotten older that these same people who were the least understanding are the ones who want the most sympathy when anything happens to them.

I grew up with an older brother who made it his lot in life during childhood making me miserable, and maybe it's made me more sensitive, though it seems like it could have made me tougher. I can remember being as little as three or four years old and he would tell me over and over how I was a worthless piece of crap that came out of the south end of a northbound dog. It sounds so silly, but it really did something to me. There were physical things too. And my mother detested tattling and crying, so I had no relief from his taunting.

You think we would grow up and get away from the past, but that little kid still lives inside me. And unfortunately, it seems the sadistic boy still exists in his adult self too. The last time I had to take something off him was at my father's funeral last year and it was aimed at my very ill daughter. I had to sit on my mouth to keep the peace, but for my mental health, I do not need him in my life anymore. I can forgive, but he can find a target somewhere else. Sorry for the rant, but I needed to let that out.
Posted 7/8/2014 11:24 PM (GMT 0)
@JaSanne - I can relate. I had 3 older brothers and all 3 treated me like crap. They would call me fat, ugly, a loser, weird, etc. all the time. My parents were utterly useless, didn't have a clue what was going on, or pretended not to have a clue. (My mum's friend somehow knew, but not my mother or any of my aunts.) That said, I don't think having 3 horrible brothers is necessarily worse than having one, very horrible, brother. I knew one boy who had a sadist for an older brother; when he was 15 or so, his parents sent him instead of the older brother away to live with an uncle; talk about sending out the wrong message. Anyway, I know what you mean about the little kid inside you. As I get older, I seem to get more sensitive to the past, not less. It just really bugs me I don't have any happy family memories as a child; not even one. Everything that I remember is miserable; the only time I was happy was when I was on my own.

For whatever it's worth, I think you are more than justified in cutting your brother out of your life.
Posted 7/9/2014 5:26 AM (GMT 0)
i don't see anything at all wrong with "i'm sorry." The guy's video/complaint seems to be based on a very common misconception, though: Sorry is not necessarily an apology, it can mean a several things. I'm sorry I ever laid eyes on your ugly mug! I'm sorry that happened to you. I'm sorry for your loss. I'm sorry to hear that. You're gonna be sorry!

the rest of that is annoying, though. i don't see it much though, probably because i don't get out much.
Posted 7/9/2014 5:24 PM (GMT 0)
@JaSanne- Some people are like cancer, they just need to be cut out. If all you get from that person is pain- you're better off w/o! Also, there's one thing to be against "tattling," it's another thing to ignore a legitimate complaint from a child who is essentially helpless. Ick. People can be so rotten.
Posted 7/9/2014 6:13 PM (GMT 0)
Bane, I agree.

NCOT, thanks for sharing your very tough family life story. I'm thankful it was just the one brother for me though my oldest sister could fall into the same category, only more subtle, and my middle sister was her usual victim. I know there is the "normal" sibling rivalry, but some childhood experiences just aren't normal. My brother occasionally (rarely) could be kind, but that was a problem in itself because just when I'd let my guard down, wham. My middle sister is the salt of the earth, wouldn't hurt anyone, and I'm blessed to have her. So I think you had a tougher time of it.
Posted 7/9/2014 9:13 PM (GMT 0)
Thanks Laurenne,

For some reason your post didn't show up earlier.

I should explain so as not to paint a terrible picture of my mother that she was raised in a very traumatic situation with her mother dying when she was a little girl. As a teen she sustained a severe beating from her father due to being, in her mind, tattled on by her stepmother (she and her sibs didn't live with her father's "new" family but with her grandmother next door, something that hurt terribly). What happened to her shouldn't have happened period and I blame her father for that, but she blamed the tattling and misapplied her life experience, something we're all susceptible to do I suppose. She had a lot of emotional problems stemming from her childhood; some I didn't learn about until she was elderly.

With my brother, she just turned a blind eye and hid his misbehavior from my dad (she did punish him at times herself), because she said she was afraid Daddy would do the same as her father, something totally unfounded. My dad was nothing like my grandfather and would never have done that.

I have no anger at my mother, though it did hurt, because I knew she had problems and we talked about it at length when I was grown.
Posted 7/9/2014 9:30 PM (GMT 0)
I'm sorry I've gotten off topic of my own post. I told my daughter about this post and she reminded me of something a friend said to her very recently. Her friend knows that she hasn't been able to hardly leave the house in the last five years, much less work due to her lung disease.

Her friend has been wanting give away a pet and asked my daughter about taking that pet, saying that, "YOU HAVE MORE TIME ON YOUR HANDS THAN I DO".

My daughter just cried, feeling like none of her friends have a clue.

I know that one has been used on me multiple times, especially at church when something needed to be done, and since I wasn't "working", it was, "will you take this on? You have more time ..."
Posted 7/10/2014 11:00 AM (GMT 0)
ouch. yeah, that one sucks. i try to get ahead of that one; i often make mournful/sarcastic jokes about how much time i have. buddies will be talking about having to work the next morning and i'll chime in with "yeah, me too. so much work. i might even have to get up before noon. Toilet's not going to fill itself with poo." or something.

It helps, though, the way I order my social interactions. It's sort of like an onion. I have the core, that I don't share with anyone at all. The next layer is my parents and a few close friends, who see a slightly filtered version of the core. Each layer after that is decreasingly intimate, but there's only 5 layers outside the core, and only two of them in a position to cause emotional pain. In those two layers there are maybe 10 people (all of whom are there on the merits of their persons), including my parents, so not a lot of opportunity to hurt me. The outer layers are simply not capable of provoking any strong emotional response from me, so my default response is to either calmly explain why what they said isn't right, or shrug it off.
Posted 7/10/2014 7:45 PM (GMT 0)
Bane,

I guess I have a similar system, but I don't have enough friends anymore, if ever I really did, to even need that many layers since I have fewer people than layers!

We've lost one of my "layers" in the past 3 years with the passing of my parents and we really miss them.
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