How do you tell people about your disease?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

uclife
Regular Member


Date Joined Aug 2007
Total Posts : 50
   Posted 1/7/2008 1:50 PM (GMT -7)   
Hi there everyone.....
 
I just received an email that really hit home to me.  Since I have been diagnosed with UC I have not been in a relationship.  I am a single woman and would like someday to meet Mr Right.  Well I recently met this gentleman and we had met and talked several times, seemed to really hit it off, but I never explained my illness until last night.   He did tell me that he had known some people with Crohns disease but not UC and felt bad.  I figured he understood.  I mean its probably the hardest thing for me to explain to someone, especially since its not the prettiest disease out there!  LOL   Well just a few minutes ago I received an email from him...subject line is SORRY.  It went on to tell me how much he enjoyed the time we spent together and talking but feels that my disease caught him off guard.  He then proceeds to tell me he doesnt think he could continue to date me because he is afraid he wouldnt be a strong enough person to be there for me and give me the support I needed.  He apologized many times and I feel he is sincere, but what am I supposed to think???
 
So with all this said.....how does a single gal like me go about explaining my UC to a potential suitor?  This disease is part of my life and therefore is part of me....so I only feel that anyone I am going to potentially be involved with should know about it.
 
I guess this whole ordeal has really hit me hard...it kinda makes this whole UC thing more of a curse than it already was.  I am sad and upset and only wish I could find someone that would accept me for who I am and have.
 
I hope this post doesnt bother anyone...it is extremely personal and I only am seeking advice on how to explain or tell people about my having UC.
 
thanks for your understanding...I find that since joining this site I have had more support from people whom I have never met than people who know me.     I am grateful for everyone in this forum. 
 
Take Care
 
 
Amy
31 yr old
Pancolitis since oct 06
waiting on that remission
asacol 12 daily, canasa suppositories, protonix, iron supplement, ativan
Trying to stay positive!!
 


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/7/2008 1:53 PM (GMT -7)   
What a jerk! But better to find out now than a year down the road! Personally, I wouldnt discuss it with a guy until you dated a while and developed more of a relationship.
Lori
38/F
UC diagnosed 1991
Asacal, zoloft, levoxyl, colocort enemas, prednisone 40m


uclife
Regular Member


Date Joined Aug 2007
Total Posts : 50
   Posted 1/7/2008 2:00 PM (GMT -7)   

hey Lori

Thanks for input...you know I probably wouldnt have brought it up but he saw me take my darn asacol and wanted to know what it was for...oh well....I am sure someday I will meet the right guy!  Might be in a nursing home by then but better late than never!  LOL

Take care

Amy


Amy
31 yr old
Pancolitis since oct 06
waiting on that remission
asacol 12 daily, canasa suppositories, protonix, iron supplement, ativan
Trying to stay positive!!
 


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/7/2008 2:16 PM (GMT -7)   
HAha you should email him now and tell him it was really herpes medication. hahaha Just kidding!!!!!!
Lori
38/F
UC diagnosed 1991
Asacal, zoloft, levoxyl, colocort enemas, prednisone 40m


uclife
Regular Member


Date Joined Aug 2007
Total Posts : 50
   Posted 1/7/2008 2:21 PM (GMT -7)   

Lori....

That would be hysterical!!  Oh my goodness, thank you so much, you made me laugh.  I really needed it!  :-)

I guess sometimes you have to pick your stressors and maybe I am not ready for the male kind!! 

Take care

Amy


Amy
31 yr old
Pancolitis since oct 06
waiting on that remission
asacol 12 daily, canasa suppositories, protonix, iron supplement, ativan
Trying to stay positive!!
 


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/7/2008 2:27 PM (GMT -7)   
haha I needed a laff today too!
Lori
38/F
UC diagnosed 1991
Asacal, zoloft, levoxyl, colocort enemas, prednisone 40m


shoegrl2
Veteran Member


Date Joined Nov 2005
Total Posts : 675
   Posted 1/7/2008 2:55 PM (GMT -7)   
UCLife,
TheLori is correct. This guy is a jerk! First of all, WHO breaks up with a person over E-mail? That alone puts him at the top of the list of Jerk requirements. He couldn't even talk to you in person about something so personal for you? Aaaarrrrrgh. He definately was not the right guy for you and it's better to find out now. I don't know the answer to when to tell someone. I'm the type of person that would tell someone up front - get it all out in the open - then go from there. But, everyone is different. I just think that if you keep it from someone and then a relationship develops, then they'll wonder why you didn't tell them earlier and what else you might be keeping from them. But, again, that's just me.
So, don't worry. Some day you will meet a caring understanding man who will stand by your side through all of the problems. Hang in there!
Debbie
pancolitis. Osteopenia. multi-vitamin, calcium, omeprazole, benefiber, boniva. Remicade since Dec. 2005.
 
"The secret to my own happiness, my own good future, is within my own hands, I must not miss that opportunity"
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 1/7/2008 2:56 PM (GMT -7)   
what a loser he is, better to find out now. Everyone gets whacked with something......i'd rather it be UC for me than a lot of other things. I waited a while to tell my then boyfriend (now husband, I was 24 at the time) I just did not understand it myself fully, I took pills and I was fine for a very long time. For me if I were single now, I would wait until I knew it was a serious relationship or if I knew it would be an issue (meaing going away together while flaring) and if it comes up b/c you have to take your pills then so be it and if he runs and can't handle that, he probably can't handle much else in life either. Think of the future, what if you had a child who had diabetes or something (just throwing something out there) is he going to run away then too?

My husband was good about it and always has been (as long as I keep him in the loop and don't keep it all inside then flip out on him, it works both ways = ) not to say it is not difficult at times.

Having UC I do everything I want and let me tell you out of most of my friends I do more than them, I try not to let it hold me back. Also, from what my husband tells me about his friends complaining about their wives, I am an angel (or maybe he is trying to stay on my good side = ).

One theory is that I have more time to worry about 'real things' than spending time thinking about things he is doing wrong or not enough of and giving him a hard time over it (I mean that to be funny but also true). We are also both very indepedent people.

So basically, just b/c we have UC doesn't make us any less and you should never feel that way and no one should ever make you feel that way.

I would explain it the way you want to but also try to make joke to help it go down, i.e. "there will always be good magazines in the bathroom" or something.......
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/7/2008 3:12 PM (GMT -7)   
I'd use the honesty approach with every new relationship, it'll make it easier to weed out the jerks...most people have some health issue, and not everyone is shallow, so don't worry, mr. right is out there, it's all timing, it'll happen when it's suppose to...but it will happen.

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


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 1/7/2008 3:13 PM (GMT -7)   
Hi Amy, sorry you got a "sorry" email. But like everyone said, he's the jerk and you are better off now rather than down the road. I don't know if there is ever a "right" time to tell someone about an illness or an issue in your life. I don't have UC and my daughter (who has UC) hasn't started dating yet. Good or bad, UC is a part of your life and the man of your dreams will be strong enough to accept all of you!
I am glad you have been able to vent here. Aren't these people the best!!
--Mom of bratcat (16 years old)--
bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 7.5 mg prednisone, 2 tabs 6-mp
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone.


jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 1/7/2008 3:16 PM (GMT -7)   
Hi, as the mother to a 19 year old girl, i think about how she is going to deal with uc in her relationships,part of me wants to tell her not to tell someone until she thinks it may be an important relationship,
on the other hand i won't say that to her because she didn't ask for this disease and i don't want her to be ashamed- i will not advise on this unless she asks. that said there are going to be many people that know they don't have it in them to worry about someone else, and get involved in the unknown. i can understand there postion and i guess it's good that he was upfront-if you can call an e-mail up front-

his loss-
Mom to 19 year old daughter diagnosed 11/07.
asacol 2 3x daily
colazal 3 3x daily
proctofoam 3x daily
mesalamine enema 1x daily
canasa suppostiories 3x daily (usually doesn't get to do 3)
culturelle probiotic 1 daily
chewable vitamin
hydrocortisone enema at bed tme/now every other night


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/7/2008 3:19 PM (GMT -7)   
Wanker! This guy is a taker. He doesn't want to invest in a relationship, and you're well rid of him. If it hadn't been the UC, it would've been something else later. "Oh, you actually expect me to meet your family? Sorry, that's way too needy for me. I'm out." You know the type.

Also remember you don't have to give anyone information you don't want to. If someone asks about your medications and you aren't ready to discuss it yet, you can either not answer or tell them they're vitamins or supplements or something. I have a tendency to respond to questions about things that are none of the asker's busines by saying "Why do you need to know that?" very, very nicely. Usually they get embarrasses and say never mind.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 1/7/2008 3:31 PM (GMT -7)   
Yup. Jerk....wait A-1 jerk. Just to let you know, after being married for 17 years, I found myself in the "dating" seen at 48 yrs. old. I truly thought the same thing...I could be seen as damaged material. Guess what? I met someone whom I liked, and after about 3 or 4 dates, I came clean with him and told him everything he needed to know. I was scared to say anything, but his words to me were...."Well, everyone has something." And that was it. He even looked it up online to see what I had to deal with, and now he knows when my stomach is bothering me. One night he just started rubbing my belly and I said, "Thanks, that feels so good...how did you know my gut was bothering me?" He said, "Because when it's bothering you, you lay flat on your back." Now how's that for being caring? There are a lot of caring guys out there so it was probably better to find out right off the bat that this guy was a creep rather than later on.  

Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 1/7/2008 4:29 PM (GMT -7)   
Im a 33 year old guy who has had UC since 20. I went through the party time of life with UC. It wasnt easy. I tried to hide what I could. I had a very long term relationship and she was pretty understanding. Some other dates never found out about it... I did start talking to one girl and told her about it - she disappeared....but I have pretty thick skin, so no big deal. I got married about 1.5 years ago. I told her a few dates into it in the beginning. She was understanding. I do feel bad now because I see the compassion she has for me and know she feels very sad when I am sick - I hate to put her through that and feel pretty crappy about it...but on the positive side - there are good people out there who wont ditch you for having something you didnt ask for in the first place!

I agree with the others - that dude was the type who would have bailed under any hard situation....wanker....
33 yr old male. UC for 13 years. 40mg pred, 12mg Asacol, Fish oil pills, Garden of Life probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland.


KDgirl26
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 1/7/2008 4:57 PM (GMT -7)   

Hi Amy! I'm so sorry you got that kind of response from that guy. But as everyone else has said here, he's obviously not worth your time. You don't want someone in your life that can't support you and help you deal with this. I know it's easier said than done, but try not to worry about finding Mr. Right. It will come when it's supposed to come, and maybe having some time to yourself will help you to learn how to deal with all this the best you can. It will help you to know that you can take care of yourself during a flare and that there's always a light at the end of the tunnel.

I too worried about this when I was first diagnosed and not seeing anyone at the time. When I starting dating people afterwards, I was doing pretty well with the condition so I never really felt the need to tell anyone about it. I am currently in a relationship with a WONDERFUL man and when we first started dating, I worried how I would tell him about all that I have to deal with. Luckily he is very understanding and apparently not scared off by any of this (although it seems to me I have a fairly mild case of UC). He's very helpful when I am flaring and is always willing to make a pit-stop or 2 when we're driving and I'm flaring. We also just moved in together which means he is now fully aware of my medication schedule which was honeslty my biggest fear. But he is proving to me all the time that there are understanding and caring people out there who can be a tremendous support system for you.

Please don't worry about this. We all have so much to think about when it comes to this DD, and adding this to the pile does not help. Just be grateful for the people you do have in your life and know that it's only a matter of time before you meet someone great right around the corner!


Jenny 
Diagnosed with Left-sided UC in February 2005
Currently taking:
Cloazal (9 pills/daily)
Rowasa (nightly, semi-nightly)
Probiotic--VSL 3 (once daily, sometimes more)
Multi-Vitamin (daily)
Folic Acid (daily)
FiberCon (2 pills daily)


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 1/7/2008 4:57 PM (GMT -7)   
So he can't deal with YOUR Colitis?!?!?What would this selfish prick do if HE had it?The thing is,he's so self involved,he also doesn't realise the damage he's done.Please don't let this bad experience colour your view of how people may or may not react.There are many men out there,that would accept this,and taking care of you during a flare would just be another way of expressing their love for you.As for the right time to tell someone,I guess one consideration would be if you're in remission or flaring.If you're flaring,he'll probably ask at some point.If you're in remission,you'll have time to establish the relationship first.

Just don't let this one guy knock your confidence.After all,there are over six billion humans on this spinning rock!We all have different views and opinions.

uclife
Regular Member


Date Joined Aug 2007
Total Posts : 50
   Posted 1/7/2008 6:10 PM (GMT -7)   
I just wanted to thank all of you wonderful people that replied to my post....you all have put a smile on my face!!!  I mean I had some good belly laughs.  You all made great points and I feel so much better.  I know that the right one will come around when its meant to be.  And yes, I am sure this guy probably would have ran off even if another challenge were to come his way. 
 
I am in much better spirits now thanks to all of you, I so appreciate it.  I am so grateful for this forum...I would be lost without it.  Its so comforting to know that I can talk openly about my issues.
 
Thanks again,
 
Amy :-)
Amy
31 yr old
Pancolitis since oct 06
waiting on that remission
asacol 12 daily, canasa suppositories, protonix, iron supplement, ativan
Trying to stay positive!!
 


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/7/2008 6:54 PM (GMT -7)   
I wish we could all get together for drinks! cheers!
Lori
38/F
UC diagnosed 1991
Asacal, zoloft, levoxyl, colocort enemas, prednisone 40m


uclife
Regular Member


Date Joined Aug 2007
Total Posts : 50
   Posted 1/7/2008 6:56 PM (GMT -7)   

Lori

That would be a hoot!  Although I dont drink I would still love that!!!  LOL

Take care

Amy


Amy
31 yr old
Pancolitis since oct 06
waiting on that remission
asacol 12 daily, canasa suppositories, protonix, iron supplement, ativan
Trying to stay positive!!
 


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 1/7/2008 7:02 PM (GMT -7)   
One other thing;dumped by e-mail?Everyone on this board has gut problems,at least we're not GUTLESS!!!

UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/7/2008 7:11 PM (GMT -7)   
UC-Life/Amy - I was just talking to my fiance about your post, as I am about your age and can remember how hard rejection was from any guy, much less with the added UC factor. so, here are my/our thoughts:

1. the guy did you a favor by bailing. if he is that much of a loser, better you know this early than to actually get attached and then find our he is worthless. so, you dodged a bullet and he did you a favor by showing his lameness early.

2. as for the bigger question of when to tell someone, and how, I think some of it depends on:
a) if you're flaring or in remission at the time
b) your goals (you want a relationship or just someone to date)

so, if you are having symptoms when you meet the guy, he'll figure out right away that something is up, right, and then you can just tell him. but, if you're well, I think you can hold off on telling the person until you trust them. my fiance made the point that no one approaches a first date and lays out all their baggage, so you have no need to tell someone about your UC right away. I think that waiting until you have hung out with the guy at least a half dozen times, and have some trust and time with them, helps you assess if they are worth telling and, if so, when. I think that because this disease is not terminal, you don't "owe" an up-front explanation to someone. let them spend some time with you, see who you are as a person, see if they are someone you want to have something with, and then tell them, when you feel you can trust them. and if they can't handle it, then your UC is like a litmus test that weeds out the losers early, as you don't want to spend your life with someone who can't handle it, as UC is not nearly as rough as some other illnesses out there, and a partner needs to be someone who can handle the rough times.

also, do you ever meet people in the medical profession, I mean socially? this may sound strange, but I think dating someone who understands medicine could also be helpful, because then they would understand the disease and the fact that it is embarassing at times, but not the end of the world. I had been dating my boyfriend (now fiance) 2 years when I got diagnosed, but the thing is that he works in medicine, and that makes a huge difference, I think, in how he has approached the disease. whereas I freak out, he tends to jsut research the science behnd my drugs, and tell me why I shouldn't be so scared. so, if you can meet someone who has some background in this stuff, that might be helpful. in any case, just remember that EVERYONE, every single person in the world, has something in their life they have to "confess" to someone they date, not just us. ours is different, but it is totally managable. if the guy can't handle it, that's his problem, not yours, even if it doesn't always feel like it.

hang in there.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, a probiotic.


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 1/7/2008 9:31 PM (GMT -7)   
uclife - I know exactly what u feel, but trust me - its far FAR better that you were honest upfront and he was honest (although lame/cowardly) back.

I have been in a relationship now for near on 3 years and everything was awesome till my colitis flare. Before the flare, I had explained what might happen and he was cool with it from what he said. This flare however has lasted 18 months now and has been very hard/stressful.

BUT, the nasty thing is that it turns out he wasn't so cool with it as he thought. Initially he was really supportive but as the drugs I was on increased and the dose increased I think he started to see what I had meant by turning my life upside down.

After about 6 months he started to distance himself and bury himself in work. I am hoping that the talks we have been trying to regularly have are helping, but when someone who is the centre of your life and such a source of strength looks you in the eyes and tells you "I don't know if I love you any more", its rather devastating.

In future, I will make it plainly obvious to any future possible partner exactly what it may entail and I hope they turn me down rather then let me settle down with them, only to loose them to this disease again.

*end rant*

I really needed that... Rather cathartic actually :-)
"We are dreamers, shapers, singers and makers..." - Elric, elder Technomage

Post Edited (Severin) : 1/7/2008 9:41:29 PM (GMT-7)

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 11, 2017 12:30 PM (GMT -7)
There are a total of 2,904,049 posts in 318,715 threads.
View Active Threads


Who's Online
This forum has 158118 registered members. Please welcome our newest member, yoho.
397 Guest(s), 15 Registered Member(s) are currently online.  Details
NicHostetler, Michelejc, Psilociraptor, Kct, yoho, eldonkey, 1000Daisies, Laugh and live, NiceCupOfTea, ASAdvocate, cb7, Chrissy01, Szabo246, Village Crazy Lady, Traneboy