Crohn's is taking over my life, but nobody believes me

[tracy3808]

I was diagnosed with Crohn's back in '92 when I was 12 and have come to the conclusion that this is a disease people do not understand. I have been forced to keep it a secret from almost everybody in my life because I cannot handle people not believing that I am sick. This makes for a very lonely life because I feel I have to hide whenever I have a flare to avoid people and their judgement.

Has anybody else had this issue? How do you deal with it?

 

[If*]

Hello, thank goodness for this forum ~ if you don't have it you don't understand it. Being Chronic most do not want to hear it even though they care. I can't waste my time trying to explain something they will never understand. Often they have loads of reasons why it happens, how to fix it etc. Nonsense! You alone know how you feel as we each do. It is not a secret but using discrepancy of who is worthy in your circle. Maybe you are not hiding when you flare but retreating to rest since this can be exhausting. People can be cruel and the commercials do not help implying that this is merely a pooping illness.

Who is anyone to place judgment anyways.

Try not to take them serious, they are ignorant to what you experience. I know this can be a lonely illness. I come here and feel much less alone.:hug:

 

[mish2575]

I think part of it comes with age/confidence . . . the willingness to share. I imagine that having Crohn's at 12 and through teen years made you SUPER self concious and embarrased about it.

I was diagnosed as an adult (mid 20's) and am generally a confident adult. I tell anyone as the subject arises. Most people at work know I have it. I have not had anyone question me before and if they had i hadn't taken it seriously. If someone doesnt want to understand i dont bother explaining. If they treat me wrong, I wouldnt associate with them.

 

[ronroush7]

Diagnosed in 1990. At first, it didn't seem like my wife understood but now she is better about it but nit sure if former co-workers understood.

2

 

[SaraBeth11]

I think most of everyone with this disease has felt like this at one point or another. I am the only one in my family diagnosed with Crohn's and absolutely no one that doesn't have it, understands it. It really sucks and it goes deeper than just feeling sick. It affects your confidence, self esteem, your whole life. That's what is SO great about this forum because there are people out there who are dealing with the same thing and can understand. Try to block out the negative, and don't worry what people think. It isn't a pleasant disease but you should never be embarrassed about it. It makes you who you are. I've accepted the fact that I will always run into people who play down the disease like it's nothing or think I'm overreacting. YOU know how YOU feel and that's all that matters. Keep your chin up and own it. Good luck with everything

 

[tracy3808]

Thanks to everybody that responded, it is an encouragement that there are people who do understand the Crohn's is more than a stomach ache or someone looking for an excuse to be lazy.

 

[MichelleE]

I know with my crohns I've been in a flare up for over 10 months now.. I push myself to carry on my day to day activities as best as I can... so to a lot of outside people I look and act normal. A crohns patient I believe gets very good at covering up symptoms. I feel sometimes that people because they maybe don't "see" the disease that they figure it can't be that bad. I think too that people don't believe that it can go on for as long as it does. Having this disease has taught me not to judge anyone on how they are feeling or what their ailment may be... who am I to comment on how severe someone else's symptoms are. I only wish that others would give me the same respect. Keep your head up, and know that you are not alone.

 

[ronroush7]

I hope you feel better soon, Michelle.

 

[MichelleE]

It absolutely is a disease that unless someone has experienced it they can't quite understand... that is why this forum is so awesome cause you know here we are not alone. Hang in there Amaze....

 

[Daddy119]

Hi,

I can totally relate. I have had some sort of issue my whole life (now 44) with my bowels. It may have been IBS when I was young (or IBD - who knows - was never checked). Even fun things like going to a friends for dinner or going to a show or going to watch my kid's baseball game (where there are no washrooms nearby - know what I'm saying?) all become a worrisome event. Sometimes (and thank God for those times or I would be totally beaten down) I feel ok and think, "Ok, maybe it's gone". Then, BAM it hits again and you feel so frustrated and at a loss at what to do. My wife even after all these years just doesn't get it. This forum has been a great shoulder to lean on at times. Great to know others get it! I guess we have to take it one movement at a time.

 

[jt5]

Literally a nightmare when I flare last time and ended up in the hospital. I had to missed school suddenly and nobody knew what happen to me, and I have to lie about missing school because of family problems or make up some story. I know I should just be honest and tell people of my disease but I don't like telling people I'm sick and etc. So yeah, everytime I flare I feel pretty miserable and medicine and just makes me puffy and don't know what to tell people why my face is swollen like a donut

 

[ronroush7]

Sorry you are going through this.

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[tracy3808]

jt5, I can completely relate. Have either been in remission or had mild to moderate flares for years. Therefore I did not tell anybody about my Crohn's because I had so much grief before. I would just make up reasons not to et in public if feeling ill, or claim to be a loner when I was fatigued and did not want to go out at night.

But the last few months going in and out of hospital has forced those around me to know I am sick. Am feeling the backlash right now, one close friend of mine barely speaking to me because this has been going on for too long. It is lonely as I have no family local and now no friends who can deal with my disease.

 

[Johnnysmom]

I completely agree that people do not understand.:voodoo:

I don't even talk about my son's crohn's anymore to any of my friends. They just don't get it. Last week my son had pneumonia, blood in his urine, vomiting a WBC of 2.9. I was on the phone with the Dr everyday, he missed the whole week of school and basketball practice. Yet I still received at least 3 texts from friends asking if I could give their kids a ride to basketball practice. HELLO my son isn't even at practice because he is SICK. Then we finally make it to the game on Saturday (which he can't play in because his spleen is enlarged from his illness) and not one of my friends asks how he is doing. And I swear I saw an eye roll when I brought it up.

People do not understand. I am sorry you are going through this and I am sure my little rant didn't help. But, I do want you to know, it is not your imagination. And you deserve more care and concern. BIG ((((((Hugs))))))

 

[Daddy119]

I guess this is all true for many diseases. With Crohns though, you can be feeling great (relatively speaking of course) and then you start to feel that sensation in the belly and you think...crap! For me the unpredictability of the disease is the biggest issue. It prevents me or at least makes me think twice about planning anything. It has really reduced the friend circle for sure. I have told a few people I work with - had to since a few years ago I hit by the trifecta (Skin infection, Cdiff (from antibiotics for the infection) and then throw in a kidney stone) all within a month :ybatty:. Of course this pissed off the Crohns... People generally don't want to hear about your sickness. I don't mind them asking how it's been since they are just being nice but what can you say? I'm fine...lol. How many times have we said that when we fell like sh%$? I've tried to focus on when I do feel half decent and can accomplish things.

Johnnysmom - I can only imagine what it is like to have a child go through this. I get concerned when they have a fever for 3 days. Hope he is feeling better.

G