Crohn's Disease Forum » Support Forum » Vent Away » People don't understand

05-09-2014, 10:34 PM   #1
Allegra's Avatar
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Location: Ireland

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People don't understand

I'm currently undiagnosed, and I find it so infuriating sometimes that people just disregard this pain because it doesn't have a specific title yet! Even my mom today on the way to school, which I have to go to despite crippling stomach cramps goes,
"Maybe if you paid more attention to your appearance you'd feel better!"
Why can't she be glad I even got up and dressed...
05-10-2014, 06:04 AM   #2
Beach bum
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Beach bum's Avatar
Join Date: Jul 2012
Location: United Kingdom

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I know it is easier said than done but try not to take things people say to heart.

When you are undiagnosed it is very frustrating for you and worrying for your family, I remember my sister asking me if it could be "all in my head?" which at the time was upsetting but I know now that she didn't mean it unkindly , she was just looking for a reason for it all and an answer to the problem the same as me.

You know how difficult it is to keep going when you are poorly and you can be proud of yourself for managing it , even if no one else realises what a struggle it is.
Good luck and I hope you get sorted out soon.
Crohn's Diagnosed : 12/07/12
Been on : Budesonide (some relief but not enough).
Switching to : Azathioprine and started Infliximab 14/08/12
Juicing every morning.
Taking vitamin D spray
Multi vits & iron
And Probio 7 probiotic.

Being given a "drugs rest" from Aza - 17/9/14
05-10-2014, 06:49 AM   #3
mamagus's Avatar
Join Date: Jan 2013
Location: North Attleboro, Massachusetts
even after you are diagnosed, people don't understand. People mean no harm - they truly don't - especially moms.

If you are cramping - when you are home - some relief I have found is a heating pad on the cramp part. Lying on my left side sometimes helps too.

When I'm in agony, as much as I want to stay in bed, I still try to get up and get out (don't want my whole life to pass by while sitting in the bathroom or crying in bed)
05-10-2014, 07:12 AM   #4
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Hugs to you Allegra.

Lord knows it is hard enough with a diagnosis let alone without one!

My daughter was undiagnosed for 18 months and I well remember what she went through with insensitive comments of others. Even as her Mum I found what she was going through frustrating at times and I do think I felt angry. I sometimes had to stop myself from losing my patience with herÖhow awful is that! and certainly feelings I am not proud of. I am just thankful I was able to stop myself. I know at the time they were borne out of fear and worry but that was my issue and something not to be lashed out at on her. My heart was breaking for my daughter and I wish everyday of my life that I could this disease away from her and make it my own. I canít speak for your mum but I imagine that is how she feels too, but sometimes we have bad days and say things we donít mean and we are so very sorry for that.

You sound like a amazingly strong young lady and I hope you soon have solid answers to what is going on, itís the very least you deserve.

Dusty. xxx
Mum of 2 kids with Crohn's.
05-10-2014, 08:13 AM   #5
Allegra's Avatar
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Thank you so much to you guys! I do try and let people's comments not get to me, I'm just so scared and I just want to be better
05-13-2014, 12:53 PM   #6
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Unfortunately speaking from experience from being chronically ill for the last 11 years, I have realized that most of the healthy society does not accept chronic illness very well. It is not well understood. Even Doctors are clueless about these illnesses it seems. Especially when you have an illness that does not show from the outside, people tend to slough it off as sad as that is. I remember a doctor ( a very ignorant doctor who was suppose to be a professor of medicine in Gastroenterology) telling me years back that my chronic Fatigue and upper gut pains I was having at that time was Not a real issue and that most women who are supposedly chronically sick are just making mountains out of mole hills!!! He told me that basically women make themselves sick!! I could not believe that he said that to me. I had to hold my hubby back, he wanted to sock the guy right then and there. And this was a doctor at a top hospital here!!! I even have family members who are ignorant to my situation as well. My own brother told me once that my issues would all go away if I just would relax and have a few drinks!! I have learned it is better Not to even bring up my illness to anyone( except for those really close to me like my hubby and my dad and a couple friends) as most of society is not going to understand nor accept chronic illness if you are not visibly disabled.. It is sad, but it is true..
05-13-2014, 01:39 PM   #7
Senior Member
My sister tries to shout me better. I love her lots and know it is just she feels so helpless. I am not too sympathetic when she complains about pains in her joints, I say welcome to my world. Allegra I think it is just people want you to be better. It is difficult but it takes time for everyone.
05-15-2014, 06:52 AM   #8
Join Date: Feb 2012
Location: Texas

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Your Mum sounds like mine! I am sorry you are dealing with the pain, lack of diagnosis and having to attend school when you obviously don't feel well. The only "good news" is that all of the above will make you the strongest, most compassionate person you know! When you are forced to tolerate pain (of several types), it changes you forever. My mother drove me batty when I was your age, but later she became my best friend. Hang in there and remember you are not alone. People here feel your pain. Things have to get better, right?
Narcolepsy w/cataplexy dx 1985
Lupus dx 2001
Positive TB test 2001
Crohn's dx 2009...(sick off/on for YEARS before)
Celiac disease dx 2009
RA dx 2010

Romans 8:28


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