Sick of telling my story

[butt-eze]

I realized yesterday that the longer I have Crohn's and the more I have to tell the story the more I get sick of sharing. It's not that I'm shy about it. I just truly feel like there are too many details and that if I share them all I will sound like one of "those people". In other words, I don't want people to feel sorry for me or worry about me. I want people to treat me normal because that's how I feel...right now.

This comes up because I went for an annual pap with a new doctor yesterday. She was asking me all about my health history and I just sucked at sharing it with her. She had to basically interview me to get the answers she needed. Maybe I didn't click with her while she was looking at my hoohoo.

When you all share your story about crohn's what do you say? If it's just a friend or family member that you're telling how much do you reveal or explain? I've noticed over the last few months that when I tell someone new I just say. I have Crohn's. It's an auto-immune disease but I'm fine, right now.

 

[mikeyarmo]

I understand your feelings. I think part of the problem is that we never know what people expect us to tell them and we are so emotionally involved with the story. I know that saying to someone I have Crohn's is enough to get them to stop asking any questions while some people want to know much more then that. Therefore I usually give minimal information unless someone keeps on asking questions.

Since we are so emotionally tied to our experience, it makes it harder to talk about and go through. While it is hard to do, it may be beneficial to try and distance yourself from the "vicitim" of the story you tell. Try to tell the story like you are an objective viewer to the events. I know that in some ways I can even feel the pain and feelings I have had if I re tell the story so I find it best to try and tell the story like I am not even involved and am just relaying the events to someone else.

 

[Agent X20]

I can see your point!
How about: "I've got Crohns... google it!" :yrolleyes:
Works for me.

 

[butt-eze]

It gets complicated to explain when people find out I've had chemo but never had cancer. I then try to explain how the doctors believe my crohn's targeted my lungs and caused BOOP. I was unresponsive to steroids and had to try chemo (which did work). Also, some people find out I was in a hospital for over a month and intubated because of this lung disease. It's hard to explain to someone who doesn't have Crohn's how bad it can get. Those people who know about Crohn's and colitis never associate it with lungs-just the GI system.
Therefore, I leave these details out until people find out about the chemo, my hair loss, etc.

 

[RHOV]

Your experience is more unusual than most which definitely contributes to having a loooong explanation. I can see why you get frustrated and tired of explaining it over and over. I agree that people need to be more aware of this disease, but I hate explaining what Crohn's is too. I've stopped eating grains and dairy, which was REALLY awkward when I went away to camp for a week. People would ask "Allergy or philosophy?" and I would say "A combination of both." I don't want everyone to know that I have a chronic disease, even when I'm not actively sick. No one wants to be known as "that person" who complains all the time or seeks attention.

I wish more people knew what Crohn's was, so that when we say "I have Crohn's," they don't give blank looks and say, "What's that?"

 

[Isla]

I don't mind talking about it or explaining what it is. The part I hate is dispelling bad or inaccurate information. Like one guy said "my neighbors brother had it, got the surgery and doesn't have it anymore." I had already told him it was incurable so I had to explain it as someone who gets an artery unclogged, does that mean none of their arteries will get clogged again? It is so hard to explain it, to take out diseased bowel not to take out the disease itself. Just things like that I think hurt the information exchange more then them not knowing anything about it.

 

[Colt]

Yeah, I run into the surgery thing a lot too. Half of the people I talk to about crohn's say that they knew a person who had their crohn's cured with surgery. The other half ask me things like how much of my intestines have I had removed and do I have a colostomy yet?

Of course when you explain that you haven't had surgery nor would it be worth it unless the only other option was a certain death in the near future they are dumb founded and start to wonder if you're really sick.

I think people see it like colon cancer. If you get sick with cancer you go through surgery, chemo, and radiation and you're practically dieing for about a year and it's all very dramatic. They don't understand that you can have a disease and not EVERYONE with the disease is in a worst case scenario. Just because I have mild/moderate crohn's disease does not mean I'm not sick.

 

[mommy1st]

I have also met many people some of which do have Crohns who have said that their doctor cured them either by surgery or by short term med use like prednisone. When I tell them that there is no cure and that I have had surgery three times they look at me like I'm crazy and I don't know what I'm talking about. I always say if surgery is the cure everyone would be in line, unfortunately its not and it is only used as a last resort. All of my surgeries were pretty much life and death. My second surgery I was really upset because I was supposed to be leaving for vacation and my surgeon said so what funeral home will you be using because I would like to send flowers. We cancelled our vacation pretty quickly. I don't think that alot of us mind telling our story if the other person is willing to listen and learn but I think that sometimes what people don't know about a disease or what they think they know comes across as being rude or non sympathetic. I think we all need to tell our stories to people over and over again to get Crohns the attention that it deserves and maybe people would see this disease differently.

 

[Isla]

I hate when people (and my Aunt did this to me recently) say they wouldn't mind getting Crohns as opposed to another autoimmune like Lupus because Crohns doesn't kill you. I beg to differ - your chance isn't as high as Lupus, but there are definite risks with having Crohns. We are blown off much like Colt represented in the drama surrounding colon cancer, because our disease ISN'T dramatic. Makes me think of the roadside animal activists that are hell bent on saving the cute and cuddly animals while the ugly unseen ones can go to the dogs, so to speak. It sucks, but that is a motivator to show the humanity and humility of our lives. I will fight misinformation anywhere I see it by anyone who perpetrates it. But more then anything, show that no matter what disease or health crisis you are facing there is always hope and happiness. That there is humility in all our conditions or lack there of. Teach humanity by relating to others with what we go through to something they can understand and grasp....

no easy task I tell you.

 

[bwightman]

Oh man....normally I don't mind explaining to people in general terms what Crohn's is and how they treat it. I try not to go into too many details about my specific issues, but recently, I basically had to tell my boss to back off because I was getting so tired of her incessant questioning and unsolicited advice about something she knows nothing about.

Don't get me wrong...my boss is not completely awful, but since I had missed so much work back in March and April because I was in and out of the hospital while the docs were trying to figure out what was going on, that when I was finally out for good, I told her that I had Crohn's. So she, being a librarian (as am I), did a whole bunch of research about the disease and the treatments and whatnot, and then basically started peppering me with questions about my specific case, what drugs I was on, what the doctors were planning to do next and so on and so forth. Then, when I started tapering off the Pred the first time and started feeling not so good again, she was all like, "I think you need to call your doctors so they can put you back on Prednisone." I know that she's only trying to help, but holy crap, it was ridiculous. So I finally told her as politely as I could that it was a personal issue and I was not comfortable discussing my illness at work. At one point she actually asked me how many times I went to the bathroom in a day!

I don't think she realizes that she completely crossed the whole personal issues line, and I think she does this because she's genuinely curious and concerned, but my god....even my own mother isn't that bad! She's since backed way off, which is good because my next step is to go to my HR rep. I don't really want to do that, but at the same time, I'm sick of the questioning and trying to avoid answering without sounding bitchy.

 

[Isla]

You should consider giving her another option for her motivation to help you. Explain to her that you do not like discussing it at length in any situation because focusing too much on the disease is hard on the psyche and that if she wants to really help your situation she should help get your mind off of it. You could explain that work is just one escape from a disease filled life and whilst at work you like the opportunity to focus on something else for a change. Otherwise well meaning people feel put off or hurt or feel like you don't trust them. If she feels you want and accept her help, though through a different avenue, she is bound to respond. As a librarian maybe she feels what she has to offer to people is her brain, her logic, her knowledge - maybe she never considered she has the power to help you "emotionally." It would probably make for a better work environment. Instead of feeling the need to be on guard from her prying and such you may just have a little fun banter with her now and then - all in an effort to make you smile

 

[Agent X20]

While I'm impressed with Isla's take on all this... I have to agree with bwightman.
I don't know if it's an age thing, or whether I've just turned into a grumpy old bugger, but I don't really see the need to explain myself to anyone (apart from my wife who is lovely and puts up with a lot). If work want to send me to see an independent specialist because of my sickness record (which they did) then I have no problem with that, but I'm not going to discuss the ins and outs of the disease with my manager... other than... "I've just had an accident, I 've got to go home and sort myself out!"
On the other hand, if you want to talk about science fiction movies or guitars, I'll talk your head off.
Hope THAT hasn't come across as too grumpy, I didn't mean it to be... i'd quite like to be a bit more like Isla, but I'm afraid I'm not!

 

[Isla]

Ya it takes a lot of work to be like me - plus I wouldn't be sure if the pink hair would suit you

Oo0o0 you could dye your hair orange and we can call you Agent Orange "Mr. Suntan, Mr. Happy Man" No more grumpy guy here

 

[CDStinks]

My pet peave are the people (most notably my mother...grrrr) who think that this disease can be treated with diet alone & being on pills will only hurt you in the long run.
I just started remicade (top-down approach) & have absolutely no intention of telling her!!!
my opinion has become that life is only so long, mine as well be as comfortable as possible & if these drugs help me feel better & live a fuller life then i am ok with that!
Point is unless you are actually suffering you cant really judge!

 

[amor151]

mmm i get annoyed when i have to tell all my friends about the disease for the 100th time! all ive ever really told them is the very basics, pretty much basic enough for a baby to understand! sometimes my tummy feels bad which means food doesnt stay in me, i lose weight, have about as much energy as a dead sloth and have stomach cramps painful enough to wake the dead. im only 15 and find it quite embaressing telling my friends about the diarrhea so tend to miss that part out and tell them the reason i stop playing football (or soccer) every 10 minutes to go to the toilet is because i have a weak bladder as well! thankfully after having a word with my form tutor all my teachers know i have the disease and know a fair bit about it so they have no problem with me running out of a lesson without warning when nature calls.

it was REALLY tough when i first got the disease though as it happened during the summer holidays and when i came back to school on the first day i was 2 stone lighter, pale as a ghost and barely able to stand up straight! i think i spent the whole of my first week back at school (the time when i wasn't in the nurses office being sick) explaining to different people about the disease.

i just wish the disease was more widely known as it sometimes feels like people think you're over reacting or riding the sympathy train when your feeling really bad....this annoys me much more than explaining to people what crohns is

 

[bwightman]

You should consider giving her another option for her motivation to help you. Explain to her that you do not like discussing it at length in any situation because focusing too much on the disease is hard on the psyche and that if she wants to really help your situation she should help get your mind off of it. You could explain that work is just one escape from a disease filled life and whilst at work you like the opportunity to focus on something else for a change. Otherwise well meaning people feel put off or hurt or feel like you don't trust them. If she feels you want and accept her help, though through a different avenue, she is bound to respond. As a librarian maybe she feels what she has to offer to people is her brain, her logic, her knowledge - maybe she never considered she has the power to help you "emotionally." It would probably make for a better work environment. Instead of feeling the need to be on guard from her prying and such you may just have a little fun banter with her now and then - all in an effort to make you smile

Oh, believe me, I've done that. I told her I was having a hard time accepting the disease emotionally and that when I came to work I just wanted to focus on something other than the disease. She's backed right off, which is really nice, but she is one of those bosses who tends to treat her employees like her children and gets a little too personal from time to time. If you don't call her on it tends to just keep getting worse.

 

[Isla]

BWightman, that is actually quite endearing to hear. Sad to say, but I think I may be that way as well. Lucky for me though I don't have any employees, as I am a sole proprietor.

I am glad she backed off, but it must be nice to have a boss that cares. A lot of the people on here have bosses that couldn't give a crap and are forced to fight almost everyday. Guess it could be bad both ways caring too much or not caring enough. Though she seems to be rather harmless and honorable!

 

[bwightman]

It is nice to have a boss that cares....she doesn't make a big deal of when I have to leave work to go to the doctor or if I work from home because I'm not feeling well. It's just that she gets a little too personal from time to time, and I think it's because she likes to feel involved in her employees' lives. Which is fine, but work is work, and personal stuff is another issue.

 

[Isla]

Ya for some people, work is their lives!

 

[theability]

The part that always burns me hotter than hell, when I had to relocate from San Antonio to Austin and had a major "ass" (pun intended) I barley made it to the ER of the Local Trauma Hospital, funny the Internal Medicine Physician, came in to give me the once over, with the NORMAL Judgemental stance and "Pain-seeker" thought process, she spent maybe two minutes looking at me, gave me a One liner, "I don't Believe you even have the diagnosis of Crohn's...

I jumped up, literally, on the way running to the nearest bathroom stated Doc, your going to feel so stupid in less the 30 seconds....

I filled the Toilet with bright red diarrhea, and said Your Fired!

Now I have a pretty good team most the time in the Hospital, they have been following me for 2 months now....

as for my friends, The usually know better than to ask a Paramedic question, especially while eating..... I give them the gory details, so they never have the will to ask why I do what I Do....all the time!

 

[teeny5]

I generally don't mind explaining it to people, but often I think they don't get it. I get a lot of food suggestions from those who apparently think I just have a tummy ache. That's annoying. The other thing that annoys me is when I have friends that keep asking me why I don't just have surgery. Um, hello...who wants to have surgery!? I try to tell them that surgery may not cure it and they just look at me blankly like "why not?" Oh well...that's why I come to this site to talk to those who truly get it.

When I don't feel like explaining it I just tell people I have a disease (or sometimes I say condition) that affects my intestines. Then, depending on the questions after that I decide how detailed to get. Some don't ask anything more...I am so thin I think that answers their question most of the time. Other times they ask like what it does and a simple statement of the inflammation and ulcers usually lets them know it can be painful.

I actually work with two women who are trying to figure out if they have Lupus. They have been through a battery of tests all that keep coming back inconclusive...they have understanding of what I am going through the best it seems.

I have only met one person who knew what it was when I told them and her response was "oh no! That can be soo painful." It was nice to not have to explain it to her.

You can usually get people to shy away from the conversation when you begin talking about bowel movements and enemas I have found. They get the TMI look on their face and you know you can stop talking about it!

 

[BWS1982]

I actually had a coworker who I told about 9 months ago tell me "oh I had an ex who had that, she was so skinny and hot, the Crohns I think was to thank for that". I gave him that nervous "yeah," and a fake smile and changed the subject, less I end up saying something regretful....

I had a manager that didn't care enough, she was horrific to deal with, some members here will remember my whining about her in a thread I did about 4 months ago....completely unsympathetic. My new one's great at the support thing. Odd thing is the previous one was a mother, this guy as far as I know has no kids, but I could be wrong...

It depends on my mood how I feel about describing it to others, I'll either be short on patience and give them a cliff notes version of "It's an incurable disease that causes the immune system to attack my body, and I'm not responding to treatments"...or I'll go into more detail, not necessarily gory, but I'll explain all the stuff about possible MAP correlation, what foods agree with me, other horror stories I've read (even some here, so they know how bad it can get) etc..

 

[drew_wymore]

I don't mind explaining to people if they ask for the details. Most of my co-workers know whats going on and ask me how I'm doing, how the tests are going and what meds I'm on. My family has mostly backed off as they were the ones doing the whole "its your diet" routine. Now that they've been to the doctor with me and asked them point blank .. can what he eats cause this and they hear NO .. I try and joke about it most often though, I just tell my boss he better be careful or I'll take a dump on his desk and blame it on the disease.

 

[BWS1982]

ha, what a load of sh*t....

 

[Agent X20]

Reading a few of these posts here has made me realise how often people say; "Oh! I know someone with Crohns disease." I don't mention it to many people, but i don't often get blank looks... maybe there a cluster of it round here!

By the way Isla... I'm happy inside! The grumpiness is only superficial, unfortunately I've got Capricorn in the ascendant! And pink hair makes me look too pale!

 

[RHOV]

Reading a few of these posts here has made me realise how often people say; "Oh! I know someone with Crohns disease." I don't mention it to many people, but i don't often get blank looks... maybe there a cluster of it round here!

It seems like most of the people who I tell (and that's not many) know someone else with Crohn's. My tennis coach watched my health steadily decline before I was diagnosed, and then when I told her what I had, she said "Oh, my aunt has that." I was talking with my high school guidance counselor the other day and told her the dip in my grades a few semesters ago was because I had been sick. Then she told me her granddaughter had Crohn's too and we had a little conversation about Remicade. I think she'll write me an excellent recommendation letter for college!

At the same time, many of the people who have a friend or relative with Crohn's still don't fully understand what we go through. It's hard to comprehend unless you actually go through it.

 

[Springsteenfan21]

i dont tell nobody i have it and i get pissed when my mom tells people and trys to get me go to crohn's disease events i just want to take my medicine and be in peace i tell some people but only if it comes up i don't go out of my way to tell people

 

[mommy1st]

i dont tell nobody i have it and i get pissed when my mom tells people and trys to get me go to crohn's disease events i just want to take my medicine and be in peace i tell some people but only if it comes up i don't go out of my way to tell people

I know what you mean. When I was younger my mom told everyone. I swear she would walk up to random people and just say my daughter has Crohns (not really but it felt like it) Whenever I would meet her friends for the first time they would say, "Oh are you the sick one" I hated that so much. As I got older I just learned to tolerate it. I think my mom just liked the attention from it. She is the type of person who always needs attention and liked it that people felt sorry for her having such a "sick" daughter. She started laying off me when she started a new job and I met her boss for the first time he like everyone else said oh are you the sick one and I said no I'm the alcoholic one just out of rehab. I was only 18 at the time and she was so embarrassed I think she finally realized what she was doing or she just tells people not to bring it up to me. Anyway just hang in there. Your mom means well but this is just a parents way of dealing with it. Remember Crohns maybe happening to you but it is also happening to your parents. Your parents have to watch everything happen to you and feel guilty because they can't take it away. It's hard for them to watch you suffer and go through test after test after test. No one wants this for their kids. Your mom has to deal with things without looking upset around you.