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How did you get your families to understand?

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Ulcerative Colitis
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Posted 10/7/2010 2:19 PM (GMT 0)
Hi!  I posted a little earlier last week.  I was wondering how you got your families to understand the seriousness of your disease?  I was diagnosed with proctitis but yesterday went to GI and he said now I have distal colitis.  I am in the middle of a horrible flair.  I am a mom of 2 year old twin boys and I work full time as a pre-K teacher so I am really struggling.  I don't have any parents and my family is in another state.  I am surrounded by my husband's family who has no clue what it is like to deal with these issues.  UGH!!  Any help would be appreciated.

Carrie

Age-37

Dx:initial:Proctitis  Presently:distal colitis

Rx: Asacol 800mg 3 2x's aday, Cort enema (just started last night), lexapro, trazadone and wellbutrin-depression and anxiety, aspirin for PAI-1 clotting disorder, cholesterol med-rcan't remember name, floraster but going to start VSL#3 when pharmacy gets it in.

Posted 10/7/2010 3:09 PM (GMT 0)
My story in brief: I have had this sickeness for over a year. At first my parents just thought it was an annoying tummy bug that would bother occasionally. My in laws who live close to us thought I could control with diet. Fnally as I got really sick I poured my heart out to my mom. Her and my dad flew in for two weeks. My husband wrote a candid email to his parents. Once my mom was here and saw me she knew. We went to the bank and I had an accident right outside and threw up in the bushes. It was then that she finally got it. She has read some literature on her own too. my in laws know that my husband and I have our limits.

We are not always on the exact page but they are here when I need them. Just try open and honest communication. Tell them the ugliness of the disease....you have accidents, you wear diapers, you bleed...whatever it takes for them to see the severity.
Posted 10/7/2010 4:45 PM (GMT 0)
I have on occasion printed out brochures from ccfa.org and handed them to friends. These days I have referred people to ccfa.org.
When I was first diagnosed, as you said, lild - once they saw me, they knew it was serious.

But now... I don't talk about it much. Part of that is that my flares are rarely bad these past years, so they don't really intrude upon my life in the way a really bad one does.

Funny, my mom lives nearby and I talked with her every day (the daily "check in") but I rarely talk to her about it any more.... she feels so guilty for passing it on, since the genes were on her side of the family. Not that anyone knew back then, either what disease my aunt had or that it "clustered in families"!)

But... there will always be those who simply don't comprehend.... and at least we have each other here!
Posted 10/7/2010 7:00 PM (GMT 0)
have your husband talk to a couple fam members and feel them out, then try to talk to them togther, explain you need help and see what happens from there. Good luck to you.
Posted 10/8/2010 1:51 AM (GMT 0)
I have alot of family who still don't understand. I've had uc for almost two years now. My mom and dad are great. My brother just don't get it because he always says just hold it(as if) and my in-laws I don't even talk to about it anymore because I always get(don't eat this, lose weight) they don't get it at all. My husband gets it but not really. He just read up on remicade and said oh now I know why you are scared people died from it. duh.

I don't think people can understand. They don't get it because they can hold it and just don't understand. It is a werid disease and most people(with good intentions)) will never get it unless they get it themselves(hope they dont). That's why I like this forum. We all get it, loud and clear.

Posted 10/8/2010 4:20 AM (GMT 0)
I don't tell my family but my fiance told his family against my wishes. I find that it's best for me to avoid people when I am feeling bad. They never understand, how could they? If I were in their shoes, I wouldn't get it either. Chronic illness is not really something you can relate to unless you're going through it. I wish I could tell you something different. My fiance has a hard time understanding and he sees me suffer for months at a time. Sometimes he pushes me to go out here and there and I really can't, I don't have the energy. If he doesn't get it after seeing me cry in pain on the toilet 20x a day, no one will. So I half live in denial and half in avoidance. Healthy way to live...
Posted 10/8/2010 12:41 PM (GMT 0)
I've been married for 21 years and it wasn't until we had been married for about 15 that I finally got into what Uc really was with my in laws. What prompted it was that my in laws bought a cottage on a river. We would go up there every weekend and work on it. However, I didn't have the energy because I was flaring at the time. My MIL would give me odd looks, like why aren't you helping kind of look. Mind you, I have always got along great with my in laws and I love them to pieces. Finally I felt it was time to sit down with them and give them an in detail description of what I was going thru. I mean, they knew I had Uc but they didn't really know what it was. After I told them, they had an ah-ha moment gleam in their eyes and started to piece together the different times over the years that I would back out of occasions or outings, or would lie on the couch and not move. It wasn't until after I told them that they understood (as best as they could). Sometimes you just need to spill it and let them know exactly what it is that you are dealing with. If they care about you, then they will try to be understanding.

I find it funny though after all these years, my in laws are now starting to have bowel issues themselves. One time my MIL had a bad bout of D and cramping for whatever reason and she told me that she totally understands now and doesn't know how I managed with Uc for all these years and still stay sane.

No one is going to truly and completely understand what you are going thru but the best you can do is educate them. Only other sufferers will truly know what you are going thru....that is what makes these forums so great :)
Posted 10/8/2010 4:39 PM (GMT 0)
During the first summer after diagnosis we went to a cottage near the lake that my mother and 3 aunts were staying at. It was 2 hours drive from home and we were planning to stay a couple of nights then driving another 5 hours to a hotel we had booked. When we got to the cottage I had the worst flare I ever had. I woke up every hour overnight for a bowel movement. I must have gone 25 times or more a day. I didn’t leave the cottage for 3 days and I had to cancel the hotel reservation. My mother and aunts saw first hand what UC could do to me. After that they were very understanding.

My brother is a different story. He thinks I brought this on myself and it is my entire fault. When I went in for surgery he was discussed with me because I had a good sick leave plan at work and didn’t lose any wages the 7 months I was off work. He accused me of getting sick and having surgery just so I could abuse my sick leave benefits. I just don’t get his attitude.

My sister in-law is positive I was misdiagnosed and I didn’t need surgery.
Posted 10/8/2010 11:57 PM (GMT 0)
I think my family was much more supportive when the mental effects of prednisone wore off and I was stronger and managing myself better. But I'm more fortunate than many of us because I've been able to have a good progression.
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