How did you tell your family?

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Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 5/13/2008 11:18 AM (GMT -7)   
On Thursday I'm flying out for another test (MRI) I'm going to be staying with my grandparents. They don't know all the health things that have been going on (my grandma would probably worry herself to death!) but because I'm going to be staying with them and they know I have to go in for an MRI, they know something is up. I'm trying to decide if I want to tell them and how the best way to tell them will be.

Do any of your extended family know? How did you tell them? What were their reactions (especially if they're the freak out and cry variety).

Thanks!
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: Salofalk 4g/day (26/02/08)
6mg Budesonide (for the next 6 weeks as of 04/04/08)

Discontinued meds:
Asacol 2.4g
Pentasa 4g


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/13/2008 11:30 AM (GMT -7)   
Hi Megera,

I've had to tell my family members about several health issues. Since they are mostly auto-immune (like Lupus and Crohn's) I explain that "my immune system is attacking my connective tissue." Or "my immune system is attacking my gut." If they ask more questions, then I give them a bit more info. If they don't pursue more info, I drop it.

Recently dx'd with crohn's . . . I told the closest and emailed the rest. That way I could carefully tell what is going on and not have them stuck with having to respond immediately to embarrassing stuff.

One called, one emailed back, etc. They've each handled it in "their own way".

I know what you mean with the elderly . . . I'm really careful how I explain to my 87 yr old M-I-L because it really is upsetting to them.

Because your grandparents will be able to "see you" it will be easier for them to believe that you are OK. Remind them that you've had these issues for a long time, but that the docs finally have a name for it and that now it can be properly treated. That seems to help too.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


RK
Regular Member


Date Joined Oct 2006
Total Posts : 153
   Posted 5/13/2008 11:46 AM (GMT -7)   
This is a tough one. Nobody wants to burden or upset their families. But sometimes they may surprise you. I was nervous to tell my extended family; especially my grandmother who was in her late 80's at the time and tends to worry about everything. My dad ended up telling her while crying like a baby the whole time. She surprised all of us with her strength and positive attitude. The rest of my family has also been so supportive. I know that I would not have been able to get through this if it wasn't for my family (immediate and extended).
 
Best way to tell them is to stick to the simple facts and to make them understand that although it can be very hard sometimes, it is not deadly and many people live with this disease.
 
Good luck!

32-year-old female diagnosed with CD in 2001.
Currently taking Pentasa 4g x four times daily and probiotics.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 5/13/2008 2:33 PM (GMT -7)   
I just blurted it out because I was still in shock...and that's just me.

Honestly, no matter how gently you try to break it to them they're gonna get upset so because everyone handles bad news differently, find a way that's suited to that...once the initial shock wears off they're always gonna be worried about you anyways.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2688
   Posted 5/13/2008 3:51 PM (GMT -7)   
Well, I was in the hospital, so there was really no hiding it from anyone. My DH would keep my Mom on top of what was going on, and she kept the family on top of everything. Not exactly how I wanted the world to find out, but I was too ill to care honestly.

Having my family know is good though, they are a huge support. I don't like how they worry (this week they were all very worried). But it's not something that can be helped with people love you.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.


not creative
Regular Member


Date Joined Mar 2007
Total Posts : 466
   Posted 5/13/2008 4:00 PM (GMT -7)   
Pretty much everyone in my extended family that we talk to knows about my Crohn’s because they all knew I was in the hospital for something serious and most were visiting me in the hospital around the time we found out I have IBD. Also, my great uncle has CD so he was definitely someone we called when we found out. There wasn’t too much reaction that I remember. People think it sucks and worry, but there’s not much else they can do.
I don’t hide my disease, I tell people as it comes up. I don’t have the time or energy to worry about who knows what so I’m just always honest…it’s easier.
Laurenne, 23 Student @ University of California, Davis.
Dx'd w/ IBS and CD in 2002
On Humira, Strattera, Zoloft, (Multivitamin, Flax Oil, and Omega complex when I remember.)


Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 5/13/2008 4:26 PM (GMT -7)   
My immediate family knows as does my BF's family, our other close family members and close family friends know as well. I've been very honest with the people around me about why I've been sick or why I need x-procedure or x-blood test.

I guess it's just not news that I would break to my grandparents on the phone from almost 2000km away (when they already worry about me!). I'm worried because my grandmother doesn't exactly handle news like this well and I've kept other health issues from her because I was worried about her reaction (my father died from cancer 12 years ago so she goes into overdrive if there's any sort of health issues).

She knows something is going on because of the MRI and I don't think she believed me when I brushed it off when I told her on the phone why I was coming.

Another thing is ahh, the food issue. She has a problem with me being a vegetarian and even more food complications is going to be difficult (I could see her blaming my vegetarianism on why I have Crohn's or even blaming it on living in the Arctic).

I don't know... I'm just worried it's going to turn into this huge thing it doesn't need to be...
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: Salofalk 4g/day (26/02/08)
6mg Budesonide (for the next 6 weeks as of 04/04/08)

Discontinued meds:
Asacol 2.4g
Pentasa 4g


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/13/2008 4:39 PM (GMT -7)   

I do not have any parents living but we do tell my husband's parents the necessities as we feel they have a right to know.  As a parent, no matter what age I am, I will always want to know what is happening with my children and grandchildren.

I am sure your grandparents will appreciate a simple explanation from you as they already sense something is not right.

Just my 2 cents.  Take care and whatever you decide to do will be the right thing.
Kitt


 
Kitt, Moderator: Anxiety ~ Panic 
Not a mental health professional of any kind
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 5/13/2008 4:44 PM (GMT -7)   
Hi, I told my whole family about my illness. Don't feel afraid to tell your family they should not be upset with you.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/13/2008 4:58 PM (GMT -7)   
Maybe it is because I have mild crohns but I don't see why this would be a big deal to tell your family. Its not like a death sentence. I guess I had problems for so long that my family was just happy that I found out what was wrong with me and I could start taking medication and maybe feeling better. Yeah it sucks that you have to deal with this for life but you were probably feeling sick anyway before you were diagnosed. Most people with crohns still live totally normal lives. You might be surprised, they might not be as upset as you thought.
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 5/13/2008 5:28 PM (GMT -7)   
I always use a low key, matter of fact attitude.  If you don't seem too concerned, it really helps your family accept it.

Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 5/13/2008 5:43 PM (GMT -7)   
"I don't see why this would be a big deal to tell your family"


It's only my grandmother I'm worried about telling because she is famous for making a mountain out of a mole hill and will go all "woe is me" about it.

I don't know... Now I'm annoyed a bit because no one seems to get why it might be a big deal to tell some family members - it's great most of you seem to have awesome supportive family and I do for the most part. And sure, I might be wrong and for once in my life my grandma might decide to be level headed and supportive but considering her track record I'm not counting on it!!

*sigh*
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: Salofalk 4g/day (26/02/08)
6mg Budesonide (for the next 6 weeks as of 04/04/08)

Discontinued meds:
Asacol 2.4g
Pentasa 4g


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/13/2008 5:54 PM (GMT -7)   
Hey Megera - I'm sorry I frustrated you. That wasn't my intent. I totally understand relatives that over-react. I guess I just misunderstood your post. I read it more as you not wanting to make your grandma sad than dealing with your grandma overreacting. I hope someone who has been in your situation comes along with advice for you.
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


Mike W
Regular Member


Date Joined Aug 2006
Total Posts : 89
   Posted 5/13/2008 6:12 PM (GMT -7)   
When I tell people I say, "I have Crohn's disease."


If they look confused I say, "I have big time stomach problems." I really have never cared how other people deal with it, to be honest. I figure I have enough to worry about without thinking about who knows and who doesn't and what they think. This also goes for my bosses at work and closer co-workers. I really don't have the energy or desire to worry about what they think. This is been my attitude from day 1.

It's worked for me.
Diagnosed in 1999.
No surgeries.

Age : 31

Currently on 75mg 6mp and probiotics.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/13/2008 6:16 PM (GMT -7)   
Yeah but this is her grandmother, who she probably cares about a lot more than a boss.
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


Mike W
Regular Member


Date Joined Aug 2006
Total Posts : 89
   Posted 5/13/2008 6:20 PM (GMT -7)   
I said it also goes for bosses and co-workers, not only goes for bosses and co-workers (ie. Family, friends, coworkers, my dog, my favorite pencil, etc.). Like I said, it worked for me.
Diagnosed in 1999.
No surgeries.

Age : 31

Currently on 75mg 6mp and probiotics.


Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 5/13/2008 6:32 PM (GMT -7)   
Thanks FitzyK23.
It definitely isn't about making her sad (I've already broken her heart by living here for 5 years ;-))it's more about her reaction and having to deal with that. The way she reacts to stuff I might as well tell her I have AIDS - seriously - she's going to make a HUGE deal out of it, cry and then call the rest of the family to gossip (I'm surprised no one else has a grandma like this!?).
If I wasn't staying with her while I'm down there it also wouldn't be AS big of a deal but also with her it's not something I could tell her casually while out for lunch.

I love my grandparents a lot (they're the only ones I have) but they're incredibly old fashioned and don't "get" stuff like this and it takes a lot of energy and effort to make them understand because they have their own 1950's ideas about stuff like this.
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: Salofalk 4g/day (26/02/08)
6mg Budesonide (for the next 6 weeks as of 04/04/08)

Discontinued meds:
Asacol 2.4g
Pentasa 4g


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 5/13/2008 6:59 PM (GMT -7)   
When I started graduate school my mother and younger sister were living in Germany. I got sick one month into my first semester. At first we thought it was mono or some other virus. After several months I had to tell my mother that it seemed to be more serious than that but no one knew what it was. She flipped out-largely because she was so far away. First she had her brother (my favorite uncle) find me a new doctor because I was only seeing the guy in the college clinic.
Then she took Emergency Medical Leave to fly back to the states for six weeks to take care of me. Now I love my mother and it was great that she could come back but it was twice as hard with her their. Everything needed to be done on her schedule which ment immediately. She did not get that a doctors appointment was exhausting and might be the only thing I could do all day. She did not get that I trusted this new doctor a lot and I knew she would find answers so she grilled my doctor and I almost had to tell the doctor not to talk to her anymore.
Once she went back to Germany things got a little easier and by then I had prepared her for the RA autoimmune thing because that is what my doc had been guessing all along. As freaked out as she got about this (she was constantly saying things like-you are too young to have arthritis-like I got to control that) she did not learn anything about RA or chronic illness she just likes to decide everynow and then that I should have better meds or better docs.

When you tell your gramma she will be upset. Reassure her that you are doing what is best for you, that you have (or are looking for) a good doctor. Reassure her that they can treat this. Then tell her two or three things that you do to look after your health. You tell her these things so she can nag you about them-if you tell her you need to eat a certain food or avoid a certain food she will watch that like a hawk. Then she feels like she has some control and you have selected what area of your life she will be monitoring.

Hope this helps.
Sj

Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 5/13/2008 7:51 PM (GMT -7)   
Thanks sjkly!

I think most of our issues will be about food (once she realises I'm not dying!) - she's very much one of those people that believe that you're not happy unless you're being fed. And being fed means of course Grandma's home cooking lol
My vegetarianism has been a sore spot for 7 years and she brings it up .every.single.time. I see her ("are you eating meat yet?"). Throwing another list of things I can't eat at her is going to be a BIG deal.
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: Salofalk 4g/day (26/02/08)
6mg Budesonide (for the next 6 weeks as of 04/04/08)

Discontinued meds:
Asacol 2.4g
Pentasa 4g


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 5/13/2008 7:53 PM (GMT -7)   
Hmmm...then don't mention what you can and cant eat-bring books and tell her you have to sleep a lot-that way you have an escape route when you need it.
Sj

Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 5/13/2008 7:57 PM (GMT -7)   
haha!! I'm already cutting the visit short and escaping to my mum's friend's house before I travel to see my mum ;-)
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: Salofalk 4g/day (26/02/08)
6mg Budesonide (for the next 6 weeks as of 04/04/08)

Discontinued meds:
Asacol 2.4g
Pentasa 4g


Erik45
Regular Member


Date Joined Oct 2007
Total Posts : 149
   Posted 5/13/2008 8:00 PM (GMT -7)   
FitzyK23 i don't think you take this disease very serious from your post. How do you define most people live normal lives with Crohn's. I know many people that have Crohn's through my Remicade infusions and they don't live normal lives trust me. I have had a good friend that did die from this disease she was 45 years old.

Sorry about this post but i hate it when i see people post most people live normal lives.
Crohns for 11 years
1 surgery so far
2 times in hospital for blockages
MEDS:
Remicade
Imuran
B12 Injections

Post Edited (Erik45) : 5/13/2008 9:05:08 PM (GMT-6)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 5/13/2008 9:47 PM (GMT -7)   
Well then how about something like this...

"Grandma, have you ever heard of crohn's disease?" if she says "yes" then say "well unfortunately I've got it but there are lots of meds and I'm sure with proper care I'll still be able to live a fairly normal life for the most part."

If she says no then explain to her what it is and go on with the "well unfortunately I've got it...

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 5/13/2008 10:07 PM (GMT -7)   
Good idea pb4!!
Thanks!
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: Salofalk 4g/day (26/02/08)
6mg Budesonide (for the next 6 weeks as of 04/04/08)

Discontinued meds:
Asacol 2.4g
Pentasa 4g


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/14/2008 9:46 AM (GMT -7)   
Erik -sorry I hit a sore spot. I DO take this disease very seriously and as I prefaced in my post it may be because "I" have a milder case of the disease that I have this view point. However, many people that have surgery, that are on remicaide, etc, still work or go to school or have families. This disease can absolutely be life altering and I did not mean to trivialize it. I guess what I meant is you can still live a good fulfilling life albeit with accomodations. My view might be skewed if my disease wasn't managable with medications. However, I still have days it gets the better of me. Recently my boss told me I might have to go on a day trip with him 3 hours north. He knows all about my crohns yet I still worry I will be sick and embarassed on the ride. So I guess you are right, that is not "normal." I guess my definition of normal was being able to work, raise a family, etc. - even if it is more difficult. I am very sorry that you lost someone to this disease. I was under the maybe mistaken impression that it is rarely a terminal illness. I know about 20 people personally with this disease. I am worse off than about 10 of them and better off than about 9 of them. So in my experience there are lots of people that can live totally normal lives. We just don't see them on the board because their disease is so mild that they don't need support. So while some people have their lives wrecked by this disease, others are blessed and continue on.

And one more thing... please read the rest of my posts and you will see that I do recognize how severe this disease is. Currently I have raised over $1000 just this year to put towards a cure. I think you and I just had different definitions of what is "normal." Part of that may be my denial and my insistence that I still live a normal life (even if to others my life is far from normal.)
 
Edited to add:
On a final note- I think I am also in a different situation because I was very sick and undiagnosed for about 5 years.  I was so relieved to finally hear that it wasn't in my head that I welcomed and embraced my crohns diagnosis.  I could final start treating it.  I think if I had been always healthy and woke up one day sick and boom was told I had crohns and would be like that for life I would be a lot more cynacal.  However, for me, being diagnosed with crohns was so much better than being told I was crazy and that there was nothing wrong with me.  At that point I could NOT live a normal life.  Now that I am diagnosed and treated I can live a modified semi-normal life.


26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 

Post Edited (FitzyK23) : 5/14/2008 11:13:51 AM (GMT-6)

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