People really don't get "it"....

[Keona]

people really don't get "it"....

I am only now just getting the gist as to how frustrating it is to tell people you have Crohn's. It is especially frustrating when this person has power over you. I was told today when inquiring about something "Oh, my girlfriend has Crohn's...what's Crohn's" I didn't say much b/c if this person really wanted to know she could just Google it. She then said "so, what does that have to do with anything?" so, I was completely dismissed and my health concerns were completely minimized. Some friend she is to the individual who has Crohn's if she doesn't even know what it is or how it impacts her. This was all regarding a sticker for my student card in September. My doctor told me I could get funding for transportation through the school if I just pay into the bus pass. Every full-time student gets a sticker that allows them on/off the bus whenever they want without paying for the school term. I had it last term as I was full-time. This term I have only one course and a lot of doctors appointments and I am starting a work program. This woman has the power as to if I get this bus pass sticker. I am not working so paying minimum of $6.00 a day is very difficult for me right now until I get these strictures and thrush figured out. The other day, I spent $12.00 on bus. I have almost daily appointments. I went as far as telling her that it is not like I can walk or ride my bike everywhere and her response was "why not?" I reminded her of Crohn's and told her I have strictures and cant even stand for periods of time. One thing I am very frustrated with having this is it takes away my coping skill (running). I can not wait to get back to running, swimming, etc. I am a VERY active person and I get a lot of benefit from exercise; enhancing my mood is the top on the list.. Now I cant stand very long even waiting for the bus. I know my health will eventually get sorted out however it is humiliating to ask for help for the time being to just be dismissed and minimized. They do it for other people, my doctor told me. She even wrote a letter to them in support of the sticker.
Someone put up a thread "how often do you cry" I replied not very, this is something that would make me cry (but I dont). It's the anger or frustration when people make assumptions. I dont because I don't want to give them more power as if they won...or give them a reason for them to think I am unstable or something.
:grumpy:

 

[Astra]

Hiya Wendy

Aw, can I just say you're bigger than that!
Some people are so thick and ignorant, and I usually tell them that if they haven't got anything nice to say, then don't say anything at all!
This Crohnie thang has hardened me, in that I do not explain to anyone about it, or justify myself in anyway to anyone, only the closest and dearest to me.
And remember, assume makes an ass of you and me! say it back to people who make assumptions based on nowt!
rise above it Wendy, but don't bite!
much love
Joan xxx

 

[Keona]

Thanks Joan. Thats what I have to be careful of. I almost said sarcastically, "Have you ever been constipated for 11 days!... or..." then I decided not to b/c I think there already is a stigma that Crohn's is "just" pooping problems. Also, she holds the power as to whether I get the sticker or not.
I have to write that on my hand I think.."rise above it..but don't bite".

I am earning money by drawing on the side however medication, supplements, transportation, etc really adds up quickly when you don't have insurance. Crohn's is an expensive disease.

I feel better now... thanks

 

[Entchen]

It IS expensive. Is it possible that if you go over her lunch hour, you can work with someone else and get your sticker? Those U Pass stickers are an absolute godsend (I had one once for a semester).

Next idea: Can you work with campus disability support services to get the bus pass? In combination with a letter from your doctor, a phone call to this twit from the people at disability services could go a LONG way. Maybe point out that you're unable to do a full-time course load at present due to illness.

Sounds like you handled yourself really well. I did cry in frustration at the Safeway pharmacy back in late May because I was charged (massively overcharged, actually, due to pharmacy tech error) for meds when it turned out that the insurance from my old job was still valid and I should have gotten the drugs for free. I thought I'd lost $110+ for 10 days of meds, just when I'd been laid off and diagnosed with Crohn's and was looking at having to pay that amount every 10 days for the rest of my life unless I found a new job with good insurance. Then, the next pharmacy tech was very sharp with me and said that the pharmacist who filled my order was on vacation and she didn't know what the arrangement for payment was so how could she refund my money. Thankfully, the pharmacist/manager finally stepped in (I'd been asking for him), I got my money back, got the true price straightened out -- and now get gushingly sympathetic looks every time I go to the pharmacy counter. I'm almost embarrassed enough to go elsewhere, except they're only 1/2 block away!

 

[Keona]

Hey Kelly,
Are the looks you get b/c you have Crohn's or because of your financial situation? Yep, convenience would also weigh heavy for me whether I stay or go.
I am actually not taking a full course-load next term b/c I only have 1 more course left (an elective). I still owe papers from last term, the disability office is amazing that way, they really fight for you and not with you. I was switched on so many different medications throughout last term that I was either sick from withdrawl or side effects or couldnt get out of bed b/c they were too powerful and made me lethargic, etc.
I am going to work with campus disability office (my doctor is in the university right across from the disability office) I go to campus health until my reg. doctor comes back. The doctor I have at MAC is amazing but I cant keep her b/c you have to be a student. In order to get insurance, you need to be full-time.
The other option I was thinking about was to find a course on-line but I do better with class discussion and interaction..just more interesting than listening to your own thoughts/viewpoint.
I was even more upset when the woman asked me, "well, cant you get your relatives to drive you if you're sick?" Again, another assumption... and I had to go at that point so I wouldnt start crying. I dont have relatives - the part that is upsetting is not that I dont have any but the fact that people always assumes everyone does. It's a dumb question anyway b/c I am an adult. I have some really supportive people who I consider family..but I cant depend on everyone else all the time. I WANT to get myself there. I think it is the frustration more than anything. Bureaucracy is set up for people in one stream I find and if you stray from that stream...they get confused and ignorant and defensive... or they make stuff up instead of checking in to it. It creates yet another hurdle or barrier.

Anyway, Im done ... I am sure a lot of you can relate but I am just finding out now how ignorant people are when it comes to Crohn's.


I have another emoticon for here but who do I send it to? I dont know how to attach it to my post.

 

[Crohn's 35]

Hi Keona, you will learn in time that is best not to figure people out, family can be the same. NO one can fathom unless you are living with it or with someone who has it. I have even seen some people take a step back like it is contagious. Ignorance will happen and people are too busy to care. Cold world out there. That is too bad you dont ride the bus free. Here, if you are in University , you and you pay the full tuition you ride transit for free. The college dont but just the university.

Dingbat can help with the emoticon for ya. Can't believe you need more lol.

 

[phillycrohns]

HI Keona:

Reading this makes me very angry. I know how you feel--in fact, everyone on this forum does. So at least you have us.

If this woman says no, do not accept that answer as the end. Go to her supervisor or manager. If they say no, go to that person's supervisor/manager. You absolutely have a valid reason for this pass and do not take no for answer. I guarantee you that someone will be smart enough to recognize how serious this condition is. If you have crohn's, you are already a fighter. Don't stop fighting! I am rooting for you...

Chris

 

[Keona]

Thanks Jettalady - same here. If you are enrolled full-time you ride the bus free. You pay the bus as pat of your tuition..but for the entire term it is the price of maybe 2 months (80.00/mth). I have one course to go (had to drop it last term as it was too much taking 5 courses).

Chris - thank-you. It gets old fighting all the time when you feel worn out - I think that is why I was close to tears..maybe. I plan on continuing fighting for it but I will let the disability office speak with them on my behalf.

 

[Entchen]

Hi Keona:

Great that you're already working with the disability office. I'm confident (or just really hopeful?) that they'll help you get the bus pass. You might not technically be full time, but you are full time according to your abilities. Sic 'em, tiger!

I'm so sorry that the question about relatives was also difficult to hear. There is an expectation that we all live near relatives and that those relatives play an intrinsic role in our lives. So many times in university environments you hear that parents should be paying part of your tuition or doing this or that for you -- really? Why does admin think every student is 18 and living with two parents who make a ton of money (yet do not work so much that they can't shuttle you to and from lecture and your appointments each day!). Look on any given university's website under "finances" and I bet you'll find a little comment that they expect you to get moulah from parents each year to help with tuition. Blah.

Re. online courses, it will depend on the individual course and instructor as to how much online conversation happens. Many online courses fail at producing the kind of conversations that people have on Crohn's Forum, but some probably facilitate really good discussions (you might e-mail the instructor before registering to ask. If they only say "discussions are required" then you might wonder about the quality, but if they talk about how interesting things are and how they enjoy people's input, then you might have a winner). I know a number of "A students" who have failed an online course - no motivation, etc., but others do quite well. Shortcomings of online courses aside, studying from home rocks. I did the last few years of grad school from home, and I work from home part of the time when I teach classes... and it's awesome. I've never done an online course, but anything that involves sitting on my bed with a computer gets points in my book.

The looks I get are because I'm the out-of-work girl with Crohn's who cried at the pharmacy counter. They must think I'm so cool. :cool2:

Cheers,
Kelly

 

[KittyPants]

I sometimes wish Crohn's were a skin disease or something, so at least people could see it and go "OMG, yeah, you just go do what you need to do."

 

[Kanonu03]

I have learnt over the years that explaining this disease to anyone is impossible. I have stopped over time because no matter how much you explain it, they will never get it! People out there hear alittle about it and assume they know everything about CD. Shit, I am still learning myself LOL! I always get, "well at least you look good"..what really does that have to do with it! I thank god I don't look the way I feel cause people would definitely run the other way! LOL! Be the better person than them...it's their ignorance and they are not worth your time! If there is nothing else I have learnt so far, it's that!

Shanan
Diagnosed with CD 2008
Currently taking Remicade since 2009
Ileocolectomy Feb 2010

 

[Mike]

I don't even tell people anymore. As Astra has said in past threads there are just too many stupid people in the world. If she says "no" then go to her boss and so on. No reason for it imo.

 

[Aura]

I get tired of telling people I am not pregnant. I have just eaten and now I am distended. I can look anywhere between 6-8 months preggy. My colleagues do give me a bit of a funny look when I blow up, mostly they are understanding but a little concerned as well. It is a hard one to explain without giving too much information.

 

[Dexky]

Wendy, I'm with Mike. Instead of trying to reason with the ignorant, take Joan's advice. In fact, I think Joan's advice is spot on for about anything and anyone.

rise above it Wendy, but don't bite!
much love
Joan xxx

After you get what you want (and deserve), you might take a little nip just to make yourself feel better though.

 

[Regular Joe]

Hey Wendy,

Bottom line is YOU have the disease. It doesn't matter who else understands.

I know all about crying because I'm a crybaby whiney-ass. But I still don't care. Joan and me think pretty close, also Pen. When I'm sick and/or crying, my feet are still moving.

It's most important for YOU to make the finance options work. It doesn't matter what anyone else thinks or understands. They are not in YOUR shoes. You have a bona fide need and the medical support to receive assistance. That's why assistance is there. That's why people enter vocations and occupations to help people.

The people who dismiss Crohn's or don't understand the whole "poopy business" we laugh and cry about - they don't need the help or assistance. In many areas of our life, we need to take care of things for ourselves because there aren't many who look after us, unless we have a close friend, ally, and lover all in one. So somebody needs to do the work to take care of you and me - often that has to be you or me because no one else is available.

Don't "bite" like Joan said. And don't waste time and precious energy trying to figure people out, like Pen said.

You are worth every effort you put into yourself. Sometimes that means taking more time and skipping things you like. But if you have the need, find "determination" within yourself - it's there as long as you have a soul.

Action. Action. Action. That gets things done regardless of how you feel inside or anyone else feels. It always works. Constructive action never fails. That is one major guarantee we often overlook.

Take care, and I understand how getting a thicker skin feels. Be good to yourself - you 're worth it.

 

[6hWQ1whjmu]

Don't even try to figure people out! I used to try and explain my problem and it started a rumor that I had AIDS!(As soon as you say autoimmune disease,some people don't wait for the rest of the story)I travel a lot and trying to explain that I need a isle seat close to a restroom has become a pain(I wear a I've gotta go bracelet) as well as using the business
class restroom. I now carry a Dr's letter to explain the urgency issue. I was put off a plane for a "medical emergency" after trying to use the restroom in front because on my way to the rear, all hell broke loose! (I do carry a change of clothes!) Well, even the paramedics were unsure of my condition. This story gets lots of laughs but at the time I wish someone had really understood the problem. Just remember that you are not alone and sometimes educating people about Crohn's can be a positive thing. I have some educational material I now give to flight attendants as well as the Dr's letter,it has resulted in some very nice upgrades!

 

[Keona]

6hWQ1whjmu - haha, I think you might be talking to people a little smarter than the ones I'm talking to - some of them dont even know what an autoimmune disease means That's terrible about the rumours.

When you say you wear a bracelet, does that mean the medical alert one? I have heard that someone is trying to develop cards for Crohn's sufferer's or diverticulitis sufferers to show store owners, etc that they need to use the washroom. This is so we can use it anywhere/anytime. Im not sure where that card is in its process but it seemed really promising.
Its not so much that people dont understand the disease - its the assumptions people make. I would much rather them ask questions to check their understanding of the disease.
I like what everyone has said, reaffirms that I am entitled to the pass and that Im not the only one who comes across really ignorant people. I'll get the pass eventually... I will go higher up!

 

[Rebecca85]

The ccfa have made the card (can't wait card). However, it doesn't have any sort of legal standing, it is still up to the store personel if they let you go.

By the way, having worked in a retail store, we were told that for insurance reasons we were not allowed to let customers use staff toilets under any circumstances. As if the customer had an accident (the hurting yourself kind, not the crapping yourself kind!) we would personally (not the company) be liable. I did relent once (before Crohn's) and accompany a female to the bathroom because she was obviously in desperate need (one of you guys?) but it was not a nice position to be placed in. On the one hand, it would have been awful for the woman had she not made it. On the other hand, had my bosses found out I could have been disciplined or even lost my job for disobeying a direct order. Just something to bear in mind, next time you ask to use a store's facilities and staff say no.

 

[Keona]

lol...so does that mean that people are more at risk of getting hurt in a washroom than in the store? Thats a bizarre reasoning... so the store, except the washroom is insured? I remember when you use to be able to go into washrooms all the time. Grocery stores here will let you use their washroom and Canadian Tire etc, but I find variety stores are pretty adamant about not letting people use them.

Do you have one of those cards Rebecca? I am just curious as to what it says/looks like.

 

[Rebecca85]

No, I don't have a card. I think it says something like 'the person carrying this card has a non-infectious health condition that may require them to use a bathroom urgently'. The insurance is because the staff toilet was in a designated, locked, 'staff only' area, you had to walk through the warehouse and loading areas to get there. So it wasn't the washroom that was more dangerous, it was getting there.