Why don't others understand?!

[whysoserious]

So today I had a family member who is very close to me basically say that I am faking my illness and need to go back to school and work, and that I can't possibly be so sick and unable to do it since my doctor's haven't found out what's wrong with me and I don't have a diagnosis. Most days I can barely get out of bed! I mean, do they think we LIKE feeling like this?! Do they think we enjoy it?! I know that others can't understand what we're going through, but at the very least they could be empathetic.

At the very least, at least you ladies/gentleman and my wonderful hubby understand. :thumleft:

I'm sure that everyone one here has had someone treat them like that. Rant and rave about it here!

 

[AndiGirl]

You are at the right place. Please don't apologize. I have CD and acid reflux. These past two days have been tough. I ate peanut butter on crackers and that isn't sitting well with me. Only those with the disorder, or another chronic illness can really understand. We know that you are definitely not faking the illness. Here's a hug! Please hand in there.

 

[whysoserious]

I'm so sorry to hear that you are feeling bad Andi. I suffer from acid reflux as well, I know how difficult it can be. You hang in there too, and I hope those PB crackers don't give you any trouble! :hug:

 

[Jennjenn]

I have just learned to ignore people like that or not be surrounded with people like that.

I would just give your relative the attitude of....."what ever"...and tell them that this can happen to anyone. It sometimes takes a long time to get diagnosed.

 

[Cat-a-Tonic]

Whysoserious, I can totally empathize. About a year ago, my father-in-law was the same way. I'm undiagnosed too and my f-i-l didn't believe there was anything wrong with me. At Easter last year, he told me that he thinks I'm either psychosomatic or that it's not as bad as I say it is, and that I should just eat normal food with the rest of the family because there's nothing wrong with me. He had been drinking so he was meaner than he usually is, and even though I started crying he didn't stop saying hurtful things.

I am glad to report that he's much better now, though. I almost definitely have some form of IBD, my GI just hasn't figured out what yet. I sent my mother-in-law some general information about IBD - what type of symptoms it can cause and what type of pain I'm going through and the food fear that I have (my f-i-l's tirade started because I couldn't eat what my in-laws were serving - at the time I was still trying to figure out what foods affected me, and I was petrified of trying new foods for fear of my symptoms coming back again). My in-laws understand me much better now, and when we visited them a few weeks ago, my father-in-law was really nice to me and said it must be so hard to not be able to eat what I want. !!! I was pleasantly shocked!

So, long story short, this family member of yours may come around in time. Don't cut them off completely, but do let them know how hurtful their comments are and let them know what you're going through. You might be surprised. I hope your family member comes around the way my f-i-l did. Good luck and I'm glad you have a supportive hubby to lean on!

 

[whysoserious]

Thank you for your replies! You are all so awesome. Cat, I'm so glad your father in law came around! I imagine it must have been especially stressful since he's your in-law.

The person who said that to me is actually my mother. I think that's why it bothered me so badly. Ever since I've gotten really sick (last year) she's acted like she isn't that interested in my IBD. At first I thought that maybe it was hard on her to see me sick, and that was why she was being kind of distant. But after what she said yesterday, I'm wondering if she even cares at all.

What really hurt is when she told me I needed to go back to school. I think about going back to school everyday. I really, really want to. But last year I tried to go to school while flaring and I just could handle it. I fully intend to go back when I'm well enough to, or am at least on proper meds, but right now it's just not feasible.

 

[Crohn's 35]

Yeah we get that alot... my wicked sister (we dont speak) used to say I was faking, whilst I am in the hospital with a flare and an IV...moral of the story, she not only has it and didnt know it and is a major bleeder!! She is in worst shape than I! So be nice to your family memebers cause this disease can hit anyone! Fate has a way of kicking you in the ass, pun intended!

 

[Ian]

God I feel sorry for anyone who has to go through that, I've had nothing but support from my family and close friends! I mean I have a diagnosis but that's not the point, to suggest you're faking is very ignorent. Glad to hear your husband is suppportive though

Whoa Pen, that's one hell of a moral... I mean I wouldn't wish this disease on anyone, but... karma's a bitch!

 

[Pirate]

I had a boss years ago that really didn't believe that I was as sick as I was. He told me I needed to get hold of my GI and have him send over a updated diagnosis. He was thinking that he would be able to prove that things were'nt as bad as I put on. My GI sent over a copy of my whole file. Never had a problem with after that. 2 weeks later I was admitted to the hospital with an obstruction and was in for 7 days, out a week and back in for 17 days.

 

[Crohn's 35]

God I feel sorry for anyone who has to go through that, I've had nothing but support from my family and close friends! I mean I have a diagnosis but that's not the point, to suggest you're faking is very ignorent. Glad to hear your husband is suppportive though

Whoa Pen, that's one hell of a moral... I mean I wouldn't wish this disease on anyone, but... karma's a bitch!

Yeah and so is my sister :ymad:

 

[ameslouise]

It never ceases to amaze me when I hear stories like this!

I usually respond with, "Wanna trade?" and that usually shuts them up.

I don't have any bleeding, thank goodness, but if I did, I would take a pic of my nasty toilet deposits with my phone and show it to anyone who thought I was faking!

At least your hubber understands and that's the biggest support you can get!

- amy

 

[whysoserious]

^Haha, that's not a bad idea.

And you're exactly right, I am very lucky to have a supportive husband. <3

 

[Crohn's 35]

It is ace when you have a husband who is very supportive, I don't know what I would do with him. Lucky me, he is my hero!

 

[AndiGirl]

I am so glad to be a member of this forum. There were many years where I felt totally alone. My brother has CD also, but he developed it at an older age than I did. My family is basically supportive, in varying degrees though. My mother and brother are the most supportive. My dad is in a weird way, though he always has to get his digs in with me some way or another. I'm thankful to have a loving husband. It's some of my extended family and co-workers that can give me grief. It is so nice to have so many friends who understand.

 

[Scifimom]

I get those kind of comments all the time. Especially since I work full time, I am an honors student at the open university and raise two kids, plus I really dont look sick I always have a healthy color (i am almost never pale) and have a high tolerance in pain.

Last weekend I was organising a treasure hunt for my daughters carnival party. I was dressed as a pirate dancing around with kids for an hour. Afterwards a parent offered me a coffee, I said :"thanks but I cant drink this I have crohns". He said "Are you sure? my (Insert random family member here) has crohns and cannot even get out of bed, plus he is skinny minie. Your color is great and you just spend an hour entertaining 140 kids. Are you SURE its not psychological? I Know the parent meant no harm but I actually snapped a little. Something along the lines of "yes I am sure I have a scar from my ribs to my pubic bone to prove it, I have 800euros worth of injections in my fridge to prove it and I havent had anything to eat since last night in order to be able to perform for the treasure hunt. Oh yes and if I drink that coffee I will spend the next two hours in the bathroom.

Scifimom

 

[Crohn's 35]

Wow scifimom, that is way too much to handle. YOU should not have to justify your health and well being. Everyone is different in handling their disease, I dont hide it and if they stay away from me because I have Cd , then they aren't worth my time. They will get the message...

 

[whysoserious]

Scifimom I can't believe someone would have the audacity to say that to you! How rude! A lot of people think that just because you can't tell that we're sick from looking at us that we must not be sick at all.

I'm still very upset with my mother. Do you know what she told me when I told her I was going back to another doctor? "You're running out of doctors." Ummmm so I should just keep going the one who a.) doesn't seem to think I'm sick and b.) was incredibly rude to me? I'm totally done giving her updates about my health, it's not like she really cares anyway. Apparently I'm just faking it anyway. :kissgrits:

 

[tiloah]

He said "Are you sure? my (Insert random family member here) has crohns and cannot even get out of bed, plus he is skinny minie. Your color is great and you just spend an hour entertaining 140 kids. Are you SURE its not psychological?

WOW! You handled that better than I would have, for sure. I would have said something like, want to join me in the bathroom so I can demonstrate!?

 

[tiloah]

I'm totally done giving her updates about my health, it's not like she really cares anyway. Apparently I'm just faking it anyway. :kissgrits:

I hear ya on this. I've started filtering what I tell my mother. She's not helpful anyway, so most of the time I tell her "I'm fine."

 

[linder553]

So sorry you have to go trough this..I as well have family and people around me that think i'm faking. I have always been heavy until now and people started rumours that i'm on drugs (I have never used drugs in my life) or that i was anorexic. I've been feeling so alone since i was diagnosed and I feel your pain. Big Big hug to you and hope people start to realize that this is a very painful disease and they need to shut up

 

[ruby]

I have had the same experiences too. Recently when a I was talking with a friend I had made some comment about not being able to eat alot of foods without getting sick. My friend then asked are you sure its not just psychological and that you only think youll get sick. My response was to tell her how about i eat this and you come sit with me in the bathroom for the next couple hours.....i dunno but i havent met one person who can will themselves to have D for hours after eating something. I am lucky however that my mother is extremely supportive and often tells me how bad she feels for me and how she wishes better for me. She has witnessed first hand the effects of eating food, and then being bathroom bound. Dont let these people get to you. Its a hard disease to have and unless people are willing to hear all the gruesome details or see the pictures of it...they need to shut their mouths....one thing i do now is carry a pamphlet with me in my purse and if anyone even remotley starts to ask something stupid i hand them the pamphlet or whatever info I have....it usually shuts them up.lol

 

[crushingcrohns]

Try having a diagnosis and STILL getting sh*t for not working still. I can't help it. I am nutrient deficient and still don't have the disease under control.
They don't understand it because they aren't going through it. It's hurtful and painful to be so misunderstood by the people you love. If they could only feel what it's like to suffer with Crohn's for 1 day! Just 1 day, maybe they would be more understanding.
This disease has put a major strain on most of my relationships becuase i've gotten to the point of not sharing with them. When you tell people things and it's like not heard by, you stop telling and talking about it.
I encourage you to keep getting support from these forums. That's all I have for support along with a few friends that listen and show understanding. Most of my support comes from forums where the people understand because you are going through it. Thank God for all of you. Hang in there. Stay connected here. We understand you.

 

[Lucy_Poppy]

I was diagnosed when I was 13 and I had to take about 2 years off school. When I did go to school I'd sometimes have to start late/finish early/take extra breaks etc and the amount of people that made snide comments about me 'bunking' and 'faking it'. Yeah , my intestines are practically destroyed , I'm exhausted all the time because I can't digest anything and I'm constantly on the toilet, I'm as healthy as can be? And these are the same people that take days off because they have a slight cold or an upset tummy , and post endless facebook status' about how they 'feel so shit , think I may have a cold coming on'. Yeah , try having crohns.

When I come across ignorant people like that I sometimes wish crohns on them , even just for a day and they would very soon see how much we have to suffer and deal with , without people like them judging us.

Gah , this makes me so angry

 

[e13 boy]

I never came across anybody who REALLY understood.
'Pull yourself together' 'You'll be ok' 'Cheer Up' all comments i heard so many times.
Only a crohnie really understands a crohnie.
I gave up trying to explain it to people as i felt like i was banging my head against a brick wall.
If i had a £ for every ignorant/arrogant comment i would now be a wealthy man.

 

[micjac]

Wow, did I ever hit the right forum this AM!!! I had to leave my position and take on another one due to the Crohns. I, too, worked for a boss who questioned my illness and even tried to block my transfer to another job... Many, many days I will go w/o eating so that I can do something special the next day w/o fear of feeling like crap/literally... Now, I have a standard, "Feel well, thanks," whenever anyone asks me how I'm doing. I know that some people really care, but too many want to give their opinion.
Surround yourself with those who support you, who mind their own business and the next time your Mom/sister make snide remarks, pull out your phone and show them your latest dump... and smile. They'll never say another word... (love that suggestion Ames, I wish I had done that w/the mean boss...)

 

[crushingcrohns]

Wow.... Some of the things people have the nerve to say boogles my mind. It's like they have no conscious to filter the garbage that they want to say, it just spews out with no regard for the person they are basically puking on.
All the negativity that our friends and family direct toward us just gives us more grief and stress to worry about. People need to realize that sometimes they need to just bite their tongue and shut the f up.
My delusional aunt is like a time bomb ready to erupt at any time. We're texting each other and it was funny how I actually missed one of her messages to me, which happened to be a freaking explosion. My response that I sent her was not to the explosion but to the message she sent right after. Let's just say my response was wayyy too nice. When I noticed the missed message and read that trash, I just laughed and thought to myself - I'll just kill her with kindness :luigi:.
Right after I read that ugly message, I pictured something awesome. I imagined that every time someone throws a dart of hatred or spews negative words, I'd get happier. It's like keep em coming you fool... I'M GETTING SO HAPPY :lol2:FROM YOUR IGNORANCE HAHAHA! Yes Yes Yes you're stupidity sorta tickles you dumb ass LOL :rof:.
I literally started to feel more happiness when I pictured this. I saw all the negativity directed toward me just bounce off and land back onto the producer of such vileness uke_r:. I was like encapsulated in a bubble of truth that NO ONE could penetrate with their hatred. It's just way to strong to let anything as small as a stupid lie get through. Only positive, encouraging, .. :tinfoil:hopeful, loving words can get through the bubble and have an effect on me. All the negative garbage will just make me laugh :ylol:
This is what I hope for all of you :heart:.

 

[ladyrose]

Wow, I'm so sorry!

My dad has colitis and seems to think it's the same thing as Crohn's. While I appreciate having someone who has some sense of understanding of what it's like, he still thinks it's the SAME. I've had him tell me that it's my fault I have Crohn's and he'll lecture me for the longest time about what I should/shouldn't eat or drink. He doesn't understand that we're not the same and what triggers him, doesn't trigger me. And furthermore, I have CROHN'S, not colitis. It doesn't just affect my colon; it affects every part of my G.I. tract. Ugh frustrating!!

 

[mcos22]

whysoserious i can really empathise what you are going through. None of my family or friends really listen to me or understand they think i am being lazy and a hyperchondriac. Unfortunately, every one i know either doesn't know what it is or thinks it is a little belly ache now and again. How wrong are they? If only they did know things would be a lot different. It's not nice when people think you are faking when you are personally in so much pain.
I think some of the problem is people don't appreciate how bad crohn's really is and that is because it's not that widely known. there are some diseases everyone knows everything about but that simply isn't crohns disease. it also isn't a visible disease so people can't see what your going through.
Keep your chin up and you should be proud of how you are coping.
Hoping you feel better soon.
Kirsty

 

[jack_t_barrowman]

I had to tell someone off when I called the private health insurance line which is in connection with where I worked. They were very insensitive regarding my condition, and told me I couldn't get assistance for my regular specialist appointments, and the way they phrased it was very harsh. I got an apology, but had hoped that anyone working in a place like that would exercise some sensitivity. I sincerely hope they took note, too!

 

[crushingcrohns]

I've found that most people that work in the medical field such as , the billing people, the nurses, reception, insurance, some pharmacists, and all the other people that work under doctors pretty much have bad attitudes:hallo3:

The nurses are the worst. It's almost as if they hate their job and try to use the little power they have to make your life miserable by not cooperating when you really need them to. You're sick for crying out loud. I completely lost my shit one day. It was just one of those days:angry-banghead: and I remember saying to myself..... please God don't let that witch take my call. Of course, she did and I yeah... pretty much ripped her a new @$$hole AND dropped a few bombs on her face .
I think it's so wrong when people purposely complicate simple situations just because they hate their lives. I pretty much was exhausted from going in circles with her constantly.
At my next appointment my doctor told me I had to apologize (his bedside manner was terrible):worthy: <--------- Yeah right more like :kissgrits:I told him I could apologize but it wouldn't be sincere and explained the difficulty she makes of every request when I speak to her on the phone. He basically said I needed to apologize or not come back. I chose to GTF outta there utahere: I was just a number there anyway. Plus, not like I haven't left a clinic before.. It's the norm for me.
My advice is try to keep it together the best you can, request someone else and establish a good rapport with them if you need to deal with the place on a regular basis. If it's a big call center like insurance company... If the person is rude, just hang up and call right back. You'll get a different rep and hopefully they are nicer than the 1st hell in heals you spoke with.

I had to tell someone off when I called the private health insurance line which is in connection with where I worked. They were very insensitive regarding my condition, and told me I couldn't get assistance for my regular specialist appointments, and the way they phrased it was very harsh. I got an apology, but had hoped that anyone working in a place like that would exercise some sensitivity. I sincerely hope they took note, too!

 

[imwood]

I'M SO GLAD I decided to read this post... my boyfriend's mother, who in many ways is a very wise woman (psychologist for 23yrs) but in other ways very blind & immature and kind of wacko (took her 15 years to get out of her own verbally & sometimes physically abusive relationship that she just broke off THIS MONTH, and also she's a Scientologist - 'nuff said) told me last night that....

MY 10YO DAUGHTER HAS CROHNS AT ALL, AND ON TOP OF THAT IS CURRENTLY FLARING, BECAUSE I STRESS HER OUT.

She said this because me & her son got in an argument. He raised his voice in front of the children, I didn't. But *I* am the cause of my child's illness. .Are you effing serious? That is so wrong, on so many levels, that I won't even bother to type about it, you all can figure out the long list of reasons that it's wrong wrong wrong for yourselves.

Even smart people can be so STUPID. Oh, and this is a woman whose house is filled with peace signs, Buddha statues, every hippy-dippy symbol you can think of, and I can't think of a more cruel and insensitive thing to say (let alone, one-sided and not at all neutral, considering her son's role in the whole situation). Unbelievable!!!

 

[Stephy Chelle]

Yep yep!! A lot of people don't get it because they aren't going through it. I'm so glad I found this forum!!! Until now I haven't felt like I could speak freely about my condition. So thanks to all of you who are reading this!!!

 

[Ms. Lander]

It's so hard for people to understand. Just because we don't look sick, doesn't mean we're okay. I have people come up and ask me what my diet secrets are, and they look at me like I'm nuts when I tell them Crohn's. I've been on Humira for 2 years, and I'm supposedly in remission, but I still have pain & diarrhea and it definitely makes it difficult to work. I'm constantly running to the bathroom. There's one lady I work with who told me that there's no reason for me to miss a workday, it's not like I have a real diease like diabetes. It took everything I had to not choke her! Thank goodness for the ones who understand, they help make the day bearable.

 

[pea]

They don't understand bc it's not happening to them. Period.

 

[phear]

yes i defiantly understand as ive had symptoms for 6+ years and still no proper diagnosis besides my gp is fairly sure its chrons. and im also 99% sure it is.

people just think it will go away and "it cant be that bad" yeah rite u sit on the toilet half your Fn life to the point you cant sit down anymore and have to lay on your side in bed between visits to the throan and see how its not that bad.

 

[Chrismac]

I've found that most people that work in the medical field such as , the billing people, the nurses, reception, insurance, some pharmacists, and all the other people that work under doctors pretty much have bad attitudes:hallo3:

The nurses are the worst. It's almost as if they hate their job and try to use the little power they have to make your life miserable by not cooperating when you really need them to.

I'm really sorry you have had a bad experience with the doctors and nurses you have seen, but I want to reassure you that they are not all like that. I work in the care profession and have worked in a hospital before. I like to think I was a caring and compassionate healthcare assistant who gave the highest standard of care to everyone, I was definitely not on a power high.

Most nurses are overworked and underpaid. It is not because they don't care but because they have 100 things to do and do not have the capacity to be in 3 places at once. It is not their fault, the government needs to sort it out.

I hope things get better for you and you find some nicer medical people.



Following in this thread I have had many frustrating experiences with people not understanding.. I often feel guilty for not being somewhere or doing something because outwardly there is nothing wrong. This leads to me overworking and not taking sick days when I need to..
But I am getting better at putting myself first, if I need time off I will take it.

 

[RaymondH]

'feel so shit , think I may have a cold coming on'. Yeah , try having crohns.

Hi Lucy. I know what you mean! Was at a dinner recently and had to laugh at my friend from childhood being dramatic about how they felt like they were going to die from this cold. He doesn't see his mom too often and she was visiting also, so that may have had something to do with it. If he had any idea... at least he didn't have to grab a ramen before he showed up (his mother is an amazing cook, but I wasn't taking any chances).

I know its hard, but it feels better to laugh than to stress about it. Stress really affects me, so I try to stay even-keeled. It is unfortunate that so many people lack empathy. Even those who you'd think would have more understanding seem to have forgotten what its like (my sister has been in complete remission for 9 yrs since re-sectioning).

I wouldn't wish this on my enemy.

I apologize if I am not using the 'vent away' subforum appropriately! :ybiggrin:

 

[RaymondH]

There's one lady I work with who told me that there's no reason for me to miss a workday, it's not like I have a real diease like diabetes.

OK, maybe I will wish it on her... for your sake anyway :ybiggrin:

 

[Crohn's45]

whysoserious;
I have to thank you for posting your story. first of all you are very brave to do so. I literaly can relate. I have been diagnosed with "serious" chrons for years. hopsitalized for months, horrible symptoms and ofcourse not to mention side effects from medicine; and guess what? my father, two sisters, uncle, and aunt, have called me a lazy bum. a loser. and that I dont want to work or do anything with my life even though I graduated college but have been fired from the majority of the jobs I have been at due to missing work from hospital stays and flare ups. my wife left me because she told me she didnt want to live like this. I am so sorry what you are going through and I feel you. sad thing is we cant pick and choose our family. hugs to you. and I know it doesnt help but I completely understand and I care.
big hugs;
Glen