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I'm at college, I'm too sick to move and everything hurts even on pain meds. I don't want people to feel horrible for me I just want to vent. People seem to think that 2 days later when they see me out I'm all better so the next day when I can't get my own food they get mad cause they think I'm being lazy or something. 

 Reply posted for TobyKai.

That is so funny that you pretended you were pregnant.  After running past the same clerk 3 times outside the restroom at Old Navy, I just smiled and said, "Morning sickness."  It's sad but people just understand that better.  I wonder if I'll be able to pull that one off when I'm in my 60s?!

Personally, I think it's a blessing that we have this forum so we can vent and gain perspective and keep our sense of humor with people who really do understand.  It's reminder that it's not all in our heads; it's a reality we're dealing with.

 Reply posted for rachj.

Welcome to my world!  I'm sure many others' can say the same.  I am starting to come to terms with the fact that people are not going to understqand, people will think what they will (uneducated or not), and people will judge me criticize me and straight out NOT UNDERSTAND.  Don't get hung up on them, you need to take care of yourself and you don't need the added stress.  I get this stress from my family on a constant basis.  It's frustrating and getting old.  I no longer talk to certain famiky members about my illness, because it turns into an argument.  LOL i refuse to fight my case about my health.  

 Reply posted for rachj.

honey, youre not alone. i have mild - severe crohns. have been on cimzia since october but have been in a flare since march. just finished prednisone (thank goodness) but am dealing with the diarrhea-constipation, major fatigue, and now a type of eczema on my legs and feet that makes me look like i should be quarantined somewhere

my dr (my new one that i got in september) found a pattern in my flares that related to my job (im a high school math teacher)....they happen at the end of each grade period (thats 4 a year). if im tired (which is pretty much all the time) and stress (how can you not in this job) its flare time. we are giving me a few more weeks to see if being out of work for vacation helps. none the less, ive opted to apply for disability retirement (I have 28 years in but only 25.89 years service due to absences including the 8 month absence last year).

as you can see and as i have read from the other posts, we all come from different walks of life and are all suffering from this horrible disease. ive been through the fury, depression, anxiety, and anger and it does get better. just hang in there. even though a lot of the public doesnt get it, there are an awful lot of us that do. i'll keep you (and all of us) in my prayers.

 Reply posted for rachj.

I had a horrible flare-up during my entire last semester in college.  It sucks.  Everyone is out having fun and it seems like no one understands.  In college you're young, you probably have no visible signs of disease.  That last semester I walked around campus with my hand on my stomach constantly (because of the pain), so I made up a rumor that I was pregnant.  People understood that better than ulcerative colitis.  I thought it was funny and would tell everyone that I didn't know who the father was (I didn't sleep around, it was just more comical that way). 
One piece of advice-- try pain killers.  They really helped me get by when I really needed to be functional for school and social events.  (I know that I shouldn't recommend pain killers recreationally, but I maintain that I would have gone into a deep depression if I didn't allow myself one night of precocet induced social bliss each week in college.)
Also, don't fret too much about your semester abroad.  I did a semester abroad in Costa Rica and experienced my first real, complete remission there.  I'm not sure if it was because of the different diet or the lifestyle, but I was worried about how my symptoms would react before I went and I ended up being pleasantly surprised!

 Reply posted for rachj.

What the others said; it's good to vent! Every time I've gone through a flare-up I end up feeling rotten and frustrated, depressed, you name it.  Some days, just because I don't happen to look like roadkill, people think I must be doing well. If I'm going through a flare, I have to remind them I still don't feel up to doing a lot of stuff. Being sick for a long time can tire you out emotionally and just drain you. I find it helps to give myself lots of quiet time, or downtime, just chilling with some soothing music, a good book, maybe a light comedy movie, that kind of thing.

BTW, I've discovered Greek-style yogurt, and it's become one of my favorite "good for you" things now. At least, last I heard, yogurt's still supposed to be good for us Chronies? Hope so. 

 Reply posted for rachj.

 I agree with all the others who say vent to your heart's content! Everyone here does understand and "get's it." I've been dealing with ulceratie colitis for nine years and during the flares, which I'm having now, it's very hard to stay positive when you know it could be a while before things get better. Every time my doc puts me back on prednisone I still cry because I hate it so much! And I won't tell you how old I am! lol. Just knowing there are people here who support each other has helped me and I'm new to this site! Hang in there! Others really do care and try not to let the ones who don't understand get you down. No one needs the added stress. Hope you feel better soon.!

TerriD

 Reply posted for marilynaz.

Hey!

 Reply posted for rachj.

Vent all you want! You are not alone in the way you are feeling at all. I know it all too well. My husband is the only one who understands it, and I'm so grateful for that. I was just recently diagnosed with CD a month ago, and my family could not be a bigger pain in the butt. Within the past year & a half, I've had to go to the ER probably 10 times or more, and I've seen many doctors. I've had tons of different tests. No doctor could figure it out, so I just kept being sent to different specialists. MY GI was finally the one to figure out it was Crohn's. My family somehow interpreted all of my health issues as a drug problem. They all truly believe I am addicted to pain medication. It is absolutely ridiculous. I would never have a narcotic addiction, as I have a medical background, and have seen, first hand, (I used to be a surgical technician) what they can do to your body. My family jumped to the conclusions all on their own, without even talking to me. I couldn't tell you the last time they contacted me, asking how I was feeling. No outsiders truly understand what we "Crohnies" go through day in & day out. Our pain is real. If we stay in, it's because we have to be close to a bathroom. If we don't get out of bed, it's because we are in so much pain & feel awful. And the lack of support just adds stress to our lives, and it just makes our symptoms worse!

I only told you my story because I want you to know that YOU ARE NOT ALONE. Use this forum to vent, as much as you need. We can lean on each other & get through the bad days, when we have no one else for support. Everyone on this site understands what you are going through, because we have all been there ourselves.

The best advice I can give is to try & stay positive, and know that everyone on this site understands.

-Lara

 Reply posted for rachj.

feel free to vent anytime you need to. that's what most of us are here for. to help each other. have you gone to the disability counselor at school. they should know about your situation.they can override what some professors consider excessive absences and also assist you with housing arrangements etc.

as far as anyone not understanding, we all know that feeling all too well. my kids have a better understanding of my condition than my husband or his family ever did. of course, he could have helped that situation but did nothing about it because he didn't understand himself. my inability to do some things were an inconvenience to the whole family. as for my side, another joke. my mother, the source of the gene, felt that if it ate as well after i got married as i did when she cooked for me i never would have got sick. her gene pool is over flowing. ibd, gluten intolerance, osteoporosis, rheumtoid arthritis and probably more that have not yet been uncovered. who knows what all with the cousins and their children.

i have an appt. with my gi this afternoon and hopefully he'll let me have some fruits in limited amounts. right now i'm feeling good so i know the most he'll do with my meds is cut back.

i shouldn't sound like i'm venting, this is your time. take care, keep your chin up and have a good trip to japan. come back anytime. marilyn    

 Reply posted for rachj.

I hear you loud and clear as does every other person on this site.   We all suffer from the day-to-day stuff that "outsiders" simply don't see.

I am the mom of a 10 yr old that has been diagnosed with CD from age 4.  I can tell you I am so outraged with family members that I simply have cut most of them off.   I know that probably isn't the answer, but they just don't get it.   It is extremely difficult, as you know, dealing with a chronic illness day in and day out.   My daughter has good days, but she also has her share of not so good days.   Lots of doc appts., meds, blood work, tests, etc.   All the "outsiders" see are those days that are fair - to - good when we attend a family function and they feel all is good and I am living the life.  (Huge misconception).  

Unfortunately, I don't think people know how to cope with a close friend or family member living with a chronic illness.   I think they simply don't know what to say or do so sometimes they do nothing and go on their merry way.   Maybe we should write a book?  

I wish you the best and hope you find some comfort in just knowing there are people (even ones you don't know) that understand and get it.

Lizzies Mom