Need tips for helping family/friends understand this disease!!!

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krw135
Regular Member


Date Joined Mar 2010
Total Posts : 186
   Posted 4/28/2010 11:10 AM (GMT -7)   
Does anyone ever feel like friends or family think you are faking symptoms for attention or something like that?  I get this feeling people think I am faking it when one minute I am fine and the next in so much pain and can't do something that was planned.  I do back out of plans sometimes for fear of not being close to a bathroom or just plain not feeling well.  I feel like they think, " oh she is sick AGAIN" grrr!!  I mean do they think we actually enjoy going thru this and missing fun stuff?  Does anyone else feel this way?
Dx with UC in 97, hospital stays monthly, tons of blood transfusion, bowel rest on TPN, prednisone, asacol, sulfa, imuran, VSP
99- multiple failed remicade treatments, more hospital stays
finally in 2001 had enough and had total colectomy (j-pouch) surgery, 1st step was good, then the reversal was not such a breeze, got peritinitis which was awful!!
the rest of 2001-2006 were amazing!
now having problems again- they are thinking Crohns.- have been on Humira with no luck


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/28/2010 11:29 AM (GMT -7)   
Yes, yes and yes. You might want to share the attached with your friends and family. Just have them insert Crohns instead of Lupus.

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf


Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/28/2010 11:52 AM (GMT -7)   
Hi KRW,

Something tells me this thread is going to get a lot of responses...

Appreciating that is hard to see our illness, unless you have a massive hernia or pouch and a bit of an exhibitionist streak; people assess by appearance first, the unfair onus is on us to prove our point.

The problem is, we don't want to -- it's enough to live it, right? On a good day we'd rather forget about it and present as "normal," only a good day can flip fast. It's enough to be sick and the energy required to prove the point is almost overwhelming.

My own family pretty much abandoned me, because they thought I was faking. Ya, that didn't help me at all.

I was lucky I had friends, some of whom got it more than others. The one's who really didn't get it I simply let slip away, but there were others who I didn't care if they got it or not, I was who I was and let them be.

I was full of insecurity, some of that caused by the Crohn's but not all. So I didn't feel confident in informing others what I was living with for a very long time. In that way I was my own worst enemy.

For those you want to understand, find a way to break it down. Start with the facts, it an auto-immune disease that has no known cause or cure, with treatments that only help 2/3's of flares, not all drugs work for all, nor is a drug guaranteed to continue to work as it once did. This is not because I don't eat well, I don't eat well because of the disease.

Try the daily facts: here's what food does to me; here's what running to the bathroom a million times a day does to me; this is why it's like for me to have NO energy-- yes I'm going to cancel at the last minute more often that I want to, and guess what, that sucks for me! Be prepared to repeat yourself. Show your suffering as often as you can. You'll see soon enough who get's it and who doesn't.

I got to the point with one of my sisters where I repeatedly said, "I wish you would understand, this is the disease, not me. I'd much rather be ... eating, going out, having fun, working..." Uh, she never got it... sigh.

Here's another thing, people get scared when they feel helpless, as helpless as we feel our friends and family do too. When they feel there's nothing they can do to help us, and feel useless, some may even blame you for those feelings. They are not your fault.

Too few figure out that 90% of being helpful in a helpless situation is just being there. Give them practical jobs, bring me soup, help me with my chores, drive me here. Show your appreciation and help them out in other ways, when you can.

Purge the really judgmental, they can't and won't be helpful and they suck what energy you do have away.

Know your limits, they will change, a lot, and don't be afraid to assert yourself with them.

I also suggest you find a good therapist, some one with and MD background so they understand your medical problems. This is a valuable resource.

Oh and see how you can arrange getting out by knowing where the bathrooms are. It's a bit of challenge, getting rides helps too, but you don't want to let yourself too isolated. Just say in advance, I really want to get out, but I'm also not feeling too well (obviously not when your cramping). I may be low energy, but I'd like to spend some time with you; yes, I'd love to join you for dinner, here's what I can't eat or at a restaurant, I might not eat much (this one really freaks others out) but I'd love the company; or, I'd like to go to a movie, but I'll need an aisle seat and I may need to go home straight after.. stuff like that. A heads up informs and might stop the stupid instant reactions... might. See how that goes.

I'm very matter of fact about having CD. Recently married, I get from some of my new family,
"Why do you talk about this? It's so negative." My response is, "No, I'm not being negative. I live with a chronic illness, it's a part of my life. Because you can't see it, I feel a greater need to let you know where I'm at. I am no more ashamed of having Crohns than I am of dying my hair. I realize this conversation makes you uncomfortable, but I'm pretty sure your discomfort will pass, mine will come and go for the rest of my life."

You can always remind them that all of us poop, though some do it with great frequency and pain, and some do it differently (like in a bag).

It sucks that the burden of proof is on us, and it's in large part because we don't get the press of MS or Cancer or Heart Disease.. sigh.

Hang in there, let us know how things go...

(((( BEST ))))

PS. I'm really curious to see how others respond to this situation...
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


krw135
Regular Member


Date Joined Mar 2010
Total Posts : 186
   Posted 4/28/2010 12:04 PM (GMT -7)   
Thank you Nanners and MToronto. I just feel conflicted, bc while I don't want people to feel "sorry" for me, I do want them to understand that I am not just backing out for the heck of it. I honestly feel really sick. I don't want them to think I am making it up and I don't want to go into detail for sympathy either! just frustrating. Even my mom who has been through all this since day one with me, and knows how truly sick I am, still does not understand. It totally makes me want to isolate myself. Drives me crazy!
Dx with UC in 97, hospital stays monthly, tons of blood transfusion, bowel rest on TPN, prednisone, asacol, sulfa, imuran, VSP
99- multiple failed remicade treatments, more hospital stays
finally in 2001 had enough and had total colectomy (j-pouch) surgery, 1st step was good, then the reversal was not such a breeze, got peritinitis which was awful!!
the rest of 2001-2006 were amazing!
now having problems again- they are thinking Crohns.- have been on Humira with no luck


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/29/2010 6:10 AM (GMT -7)   
(((((krw))))),
I also have had some real family issues with this illness, but I have to admit until they actually go thru it people do not generally get it.
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 4/29/2010 7:09 AM (GMT -7)   
yes, this disease is a peice of crap at best. I had a heat stroke this past august on a moutain biking trip, since that has happened, my dehydration is really bad my cd got bad, I get really bad chills, it seems i went down hill faster than bode miller did at whistlers. now I'm on state disability and absolutly can not work in anybodys place of business,

artist guy

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