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friends and family don't understand uc

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Posted 2/6/2010 8:46 AM (GMT 0)
i was just wondering, it seems like so many of you have supportive friends/family.  are there any of you who don't - do you feel totally alone?  it seems no matter how i explain, people just don't get it!  i feel like they think they know everything and are just humoring me.  it ticks me off big time!!! they give me advice like they are freaking experts.  and they don't respect my privacy either.  do any of  you have this problem?  for example, when i was diagnosed my family publicized my uc to every freaking person on earth, when i wanted it to remain private.  they stole that choice from me.  i feel such huge resentment for this.  and when i explained this to them, they just didn't get it...it's almost like they want to make it about them, not me!  it has been several years now since my diagnosis, and despite still trying to explain that i want my privacy, my family still blah blah blahs to all the world.  i just can't trust them.  i am worried that if i need surgery, i definitely don't want a soul to know that i have had that done!  how would i hide it from my family/friends???  and i have only told a couple of friends, and now they have decided they should offer me advice and they lecture me and discuss me amongst themselves, which reaaaaallllly ticks me off!  i am sicker than i have ever been in my lilfe right now, and i am just so depressed and feel so alone...there's just no one to talk to who won't betray me or act like a freaking authority!  has anyone ever experienced this, or am i reallly alone???  just wondering, and sorry to vent!  but people suck!
Posted 2/6/2010 2:17 PM (GMT 0)
I am in a similar situation. My wife has told me she understands because "I have IBS and that is kind of the same thing." Most of September and October I spent in the bathroom when I was home at not at work, because it was just nice for me to not have to constantly be holding it in. My wife would get angry that I was "camping" in the bathroom and leaving her responsible for taking care of our 8 and 6 year old. On Halloween, I was preparing myself to take the kids trick or treating, when I emerged from the bathroom, they were gone and I was later told... "That's our life, you are always in the bathroom."  So... UC apparently has affected my wife more than it has me? Anyway, my bm symptoms have stabilized over the last few months, and now I am dealing with weak immunity and fatigue... but at least I am not currently inconveniencing my family by being in the bathroom all the time.
Posted 2/6/2010 2:32 PM (GMT 0)
For me, it helps that one of my best friends actually HAS UC (though hers is more limited than mine). Also, my boyfriend is incredibly supportive when I'm sick.

But my family...my brother throws a hissy fit because I'll spend all morning in the bathroom. He thinks I'm being selfish or whatever, but in truth I just can't hold it more than a few minutes when I'm flaring and we only have one bathroom. Also my dad will always ask me "Was it something you ate?". He seems to think this disease is like heartburn or acid reflux.

I also have another friend who likes to babble about how taking medicine means I'm slowly killing myself. Once we were discussing animal fats and I said they don't really work for me and I prefer vegetable fats, and she was like "Well obviously they aren't working for you" (in reference to my UC). I wanted to punch her in the face.
Posted 2/6/2010 3:46 PM (GMT 0)
I've had colitis for 24 years,for the first time since 1986 it's been a bad flare for the last year.I didn't go to Dorney Park[amusement park] last summer with my family[a 2.5 hour drive from New York to Pennsylvania] because of my flaring,although i made the trip from Long Island N.Y to Cooperstown[Baseball Hall of Fame],the anxiety was terrible.My wife has got to understand this disease[we've been married 15 years],we go to therapy so we make sure we're on the same page with everything.At first when i started flaring she would get pissed off, because of her lack of knowledge mostly.If my wife made my life unbearable because i have colitis i would leave her,my health has got to come first,this disease can make your life misreable.We need our spouse to help not hurt us.GOOD LUCK
Posted 2/6/2010 5:46 PM (GMT 0)
My close friends and family have been great. It's the less close people who don't understand. They think I have IBS, which yes IBS sucks too but it's hard to explain that for most of us IBD isn't controlled with a"better diet." and I think a lot of people think that those of is with IBS and IBD are just slovenly unhealthy eaters and that if we just "ate better" we would be fine. Also someone who has never had diarrhea for months on end has no clue what that does to your body. Being malnourished is incredibly tiring, frustrating and scary. So, I find it frustrating to try to explain my being sick to people without over-sharing to get the point across.
Posted 2/6/2010 6:14 PM (GMT 0)
You really learn about how sensitive individual people are when you are in any way "different", which this disease makes you.
And the answer is...99% are not sensitive to things outside their own body knowledge.

I have a great spouse and even he forgets sometimes what my life is like because I don't go around ALL the time saying how I feel.
He has gotten better but it's taken a lot of effort on both our parts.

Here's a real kicker: I met a woman who had UC so severe she had her colon removed and wears a bag. She knew I had UC and while we were standing near a plate of donuts and I had just told her I was not able to eat much except meat and vegetables although I wished I could she picked up a donut, ate it and went "MMmmmmm. This is delicious." Insensitivity comes in all types of people, not just those who don't have it.
Posted 2/6/2010 6:38 PM (GMT 0)
Yeah I've found it pretty tough, my mum feels the need to tell everyone and anyone Her perspective is that it doesn't just effect me and that as I've had to move back in with her, she is almost like a carer so it effects her too and that I don't understand the strain it puts on people who are meant to be supporting me. I often hear her discussing it with people on the phone and was in a shop with her once looking for supplements and heard her loudly announcing to the shop assistant that I have UC! Considering how long it took me to tell anyone myself I was really annoyed.

My boyfriend is supportive but usually just asks 'how's your tummy feeling today' like I'm a child who has eaten too many sweets. I've found over the years that most of my friends have kind of disappeared - lots of them have had babies which puts them in a different place to me for a start but others found it too annoying inviting someone out who might be a pain in a restaurant trying to find something they can eat, or having to cancel plans due to being too sick. I think I'd almost prefer it if they wanted to talk to me about the illness but people just ask 'how are you feeling?' I don't think they have a clue what UC actually is. I've had bad days and started talking to a couple of friends about it before as I've almost wanted to be able to laugh about it with someone but i find people often look uncomfortable or embarrassed so I've given up!
Posted 2/6/2010 9:11 PM (GMT 0)
I feel for you Kate22.  I am very fortunate in that my family and friends are amazing in their support, knowledge, understanding, compassion and sympathy in relation to UC.  With that being said, I truly believe that they are this way because they are educated, not just about UC, but in general.  In my experience, anytime I have had a negative reaction from someone, it has been an individual who lacks knowledge and in a broad sense, education.  Compassion is a deep awareness of the suffering of another, coupled with the wish to relieve it.  Not being aware of your feelings, wishes, and your overall well-being is selfish and ignorant on their part. 

I made a decision when I was diagnosed.  If I tell someone about my UC and they don't "get it" or they are uncomfortable or "grossed out", I no longer have anything to do with them.  If it's a family member, so be it.  I will still associate with them at family functions, but they will never receive the whole "me" again.  My relationship becomes superficial with them.  If one of my friends or family discussed my health with someone, I would let them have it with both barrels.  How would they like it if I broadcast their private issues out in public?  I am a very outspoken, strong, smart woman and I refuse to allow someone treat me in a way that I would never treat them. 

I have even gone as far as emailing links to webpages for my friends or family so that they can get a better understanding of UC and everything that goes with it.  Have you tried that?  And then, if they still don't get it, kick them to the curb!  I know it's easier said than done and I don't know your situation.....Can you make a new circle of friends?  Can you distance yourself from your family?  At least until they understand that you will not tolerate the way they have been treating you?

Another thing that may help you is to become email friends with someone from here.  I did with an individual from California and I have found that the emails are more personal and it has helped us both tremendously.  The forum is wonderful for advice and information but I was looking for a more personal connection.  Perhaps that would help?

A true friend is not defined by what they say.  A true friend is defined by what they keep to themselves. 

Posted 2/6/2010 9:29 PM (GMT 0)

I did not read all the posts but at age 69 I get that "oh, I had that before" and "just watch what you eat at our age".  I had IBS for 30 years and I KNOW the difference!

My husband is finally coming around to understanding - it was hard!

ElaineNY

Posted 2/6/2010 11:40 PM (GMT 0)
Yep, we've done many threads here in the past on this topic. Some folks just never "get it" about UC, whether they are uneducated, insensitive, think they know everything there is to know about life in general, ... whatever. It's best to avoid people like that-- especially while flaring. Hard, though, to tell one's relatives to go to hell! (LOL). I have a longtime friend who closes every e-mail message with a suggestion to get together for lunch-- even last week after I already mentioned that I had caught a G/I bug! So there are times when we just need to shrug it off & keep our private sense of humor going ... That's life! / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 2/7/2010 8:36 PM (GMT 0)
I have supportive friends and family members, but you know what? I still feel alone in this much of the time!

My husband is great. He doesn't get it, and he freely admits that, but he helps me in any way he can when I am not well. But even my parents STILL think, after all this time, that if I just change my diet and get more exercise, I'll be fine. My mother keeps saying, "I just don't understand how what you eat doesn't make a difference when the problem is in your COLON." (I know diet does play a part for some, and maybe if I really did strict eliminations it would make a difference for me, but thus far, I have not seen any difference from diet modifications I have tried) It gets really frustrating.

It is hard. I get really tired of the unsolicited advice from everyone I come in contact with, most of whom have no clue what they are talking about.

I am so sorry your family has not respected your wishes for privacy-that is just not right.
Posted 2/7/2010 9:26 PM (GMT 0)
Personally, I don't care who knows and who doesn't or who agrees or who doesn't. If I didn't have an empathetic husband, it wouldn't work out.

I don't deal well with the "I had that" people when they can't answer the million questions I throw at them, because I talk the nitty-gritty. If they had it, they'd be able to answer.

I'll tell the freaking world about my "ass-disease"....who cares.
if you want people to be empathetic, the truth is what they need to hear.

q
Posted 2/8/2010 3:14 AM (GMT 0)
I basically live alone, except when my daughter is home for break from college. I really don't talk about my UC to anyone. I have tried to at work a few times but have given up. I don't think my coworkers really understand the seriousness of it or of how it affects me physically and emotionally. And I teach at a college; these are educated people. I think education and empathy do not necessarily go together. My mother tries to understand when I talk on the phone to her, but she is clueless. At a certain point I just don't want to talk about it. I don't think anyone can fully understand unless they are going through it. It is difficult to talk about something which is such a private and personal part of being a human being. I am thankful to have found this forum. Even if I don't always participate, it is comforting to read other people describe their experiences and insights. I am continually learning new things and trying to take a more active role in my own health. No one else can do this for me. I am a bit of a loner so I have learned to not depend on others for help, most of the time. Sometimes no support is better then being sabotaged by those you are counting on. This forum offers me the support I need.

F/49
Posted 2/8/2010 2:01 PM (GMT 0)
This is why no one outside of my immediate family knows about it. I do feel a bit guilty for not spreading awareness of IBD, but I don't want to deal with unempathetic people. I've already had a whole lifetime (pre-UC) of dealing with awful people and I just don't have the energy anymore.


When people ask what I have, I just say it's an autoimmune disease. If they ask specifically, I just say "oh, it's complicated..." and leave it at that. If I have a bout of diarrhea or something that knocks me out for a day, I just say that I was nauseated and vomiting.



If you do have trouble explaining to people how you feel, you may want to check out the Spoon Theory. http://www.butyoudontlooksick.com/the_spoon_theory/
Posted 2/8/2010 2:43 PM (GMT 0)
Loved the Spoon Theory!
I don't talk about it much at all to my mother; she'd just worry. (She's 83.) I do tell my husband exactly what's going on, and also share my excitement with him about a new probiotic or med or whatever, and he's wonderful but sometimes I think I see him glazing over. So I try not to overdo.

I try to be matter-of-fact but minimal in talking about it with my kids, especially now that my younger one has UC. I figure he's learning from me how to deal whenever he has the next flare.

I don't talk about it much with friends unless a flare impacts what I'm doing with them...and even so, I'm limited in what I say because they often don't understand. I have found some of the brochures from the ccfa to be very helpful in explaining to them. I was shocked to find only recently that a close friend of some 10 years' standing thought it was IBS all this time! Very frustrating.

With colleagues, I try not to say much because I don't want to be treated "differently."

My former GI (I loved him!) had a policy in which he wanted to hear from patients by phone every month or so even if they were well, and it was always a relief to be able to vent, talk in detail about the symptoms and issues.....Now that I've moved, I miss that, but - this forum does that for me. (Thanks, everyone!)

In order not to engage in a Pity Party, I remind myself that a lot of people out there have "something" - high blood pressure, cancer histories, diabetes..... I'm not the only one with the unseen issue!
Posted 2/8/2010 2:46 PM (GMT 0)
I can understand this too. At 60 and dealing with UC along with having to accomodate IBS, gluten and dairy intolerance and a few other choice issues, I continually get told... "oh it's just stress - just relax" or "yeah, I had that too, then I stopped eating chinese food", or "I sell this wonderful product that if you take, it will cure you."

I am lucky that in my job at a school, I have acess to several bathrooms and can visit them whenever I need to. Unfortunately I have to take off half a day when I get my Remicade and then for the next several days I am "under the weather" but no one understands. I have extremely low iron and anemia and everyday people tell me, "Gee you look tired." hmmmm just when I thought a little extra blush and eyeshadow made me look pretty good.

And when you tell someone, have you have people tell you, "Ohhh yeah, my grandmother died of UC..... sheesh!
_____________________________
Posted 2/8/2010 9:18 PM (GMT 0)
I don't tell anyone, not even my best friends know. And I would NEVER tell a coworker or employer.
Only my immediate family know, and they know I do not like to talk about it.

It's such an undignified disease! I would not want anyone to think about what I go through. Some people like the attention they get from having an illness, while I prefer being thought of as healthy and strong. I am very, very good at hiding it.

So I avoid all those hassles.

I am so sad for people who have unsympathetic or impatient spouses or family. I would rather be alone and have peace to take care of my needs. My husband knew that and he is completely accomodating.
Posted 2/8/2010 10:28 PM (GMT 0)
     I am very lucky that I have a very supportive spouse.  We've been married for almost 41 yrs.   When I was first diagnosed I was hospitalized and the doctor explained everything to my husband very thoroughly and I believe this helped a LOT.  My husband wasn't always so understanding of illnesses and actually, neither was I.  I suppose the old saying....until you walk in my shoes...especially with this disease, it isn't easy to sympathize.

     You didn't list your age or if you live with your parents.  But I know for darn sure if one of my children had a chronic disease I would do everything possible to help him/her NOT irritate.  Right now irritation is the last thing you need.

     Do you suppose the prednisone is part of the reason you feel like you do?  I know when I am on it, especially the higher doses, I get bad mood swings and depression.

Posted 2/8/2010 11:13 PM (GMT 0)
My family tends to think UC isnt a big deal and I sometimes feel Im a nuisance to them because of my disease. Ive accepted that no matter what I say to them, they wont understand. UC is one of those diseases a healthy person has no way of understanding unless they experience it first hand.

Ive only told a few very close friends about my UC and only really explained to one what the disease actually entails on a daily basis. Its embarrasing and extremely awkward to have to tell someone you poop 10 times a day during flares.
Posted 2/16/2010 3:47 AM (GMT 0)
I've been lucky to have very understanding friends, family and boyfriend. My mom is always actively researching UC, and letting me know about what she finds. It is nice to depends on somebody to be here to listen when I am having problems. I know I can always call her and she will try to help me out. I am lucky to have a grandfather who was in medicine and my grandmother (his wife) has another form of colitis and actually recommended her doctor to me when my GI doctor was not working out.

My boyfriend is as understanding as I can expect somebody to be, I think he sometimes gets frustrated by my being sick a lot, but he does his best. He thinks very logically and while that is not always the most comforting thing, it can help to calm me down when I am freaking out about my symptoms.

I have gotten past the point of being embarrassed, and I think that has helped a lot. I have no problem with people knowing I have UC, I think a lot of people are ignorant of the "invisible diseases" many people have and it helps my friends relate since they know me. Telling my story can only help people be more tolerant and understanding of people with chronic diseases, especially more "embarrassing" ones like UC.
Posted 9/25/2022 5:18 PM (GMT 0)
I am a family member living with a son, in his 30's , who has uc.
I am not sure how to deal with his anger that comes out in almost every conversation.
Much of it is directed at me and other family members for not helping him enough.
It makes it very difficult to function in a compassionate way because the anger is overwhelming.

Any advise is appreciated.
Posted 9/25/2022 6:04 PM (GMT 0)
I imagine his anger is more at his disease than you. And it’s a natural anger. I remember being very angry when I was first diagnosed. It’s just he has no outlet for his anger so he’s directing it at you and his family. If he could find a support group or a forum to vent his feelings at it may help him.

UC is a very lonely disease because the details of everyday life are so embarrassing you don’t want to share with anyone I didn’t even tell my husband about the number of times I had an accident.

Is your son newly diagnosed? Is his disease under control? After my anger, I went into a depression, so watch for that as well. When I finally found remission life got much better, but until then, I found antidepressants to be helpful.
Posted 9/25/2022 6:26 PM (GMT 0)
Therapy. A trained professional can help him better validate, express and manage his feelings.
Made a world of difference to me. Even talking to other UC patients was not helpful (in terms of my mental health) because it's such an individual journey.
Posted 9/25/2022 10:06 PM (GMT 0)
How bad are his UC symptoms?

On a side note, if UC is affecting your son’s life, his QOL, and IF he cannot deal with it then there is always surgery. My point is that there is a solution to his UC. Many of us who have had surgery only wished that we had it sooner. My life is so much better with a j-pouch than with my diseased colon (my UC was very aggressive).
Posted 9/25/2022 11:09 PM (GMT 0)
Is your son taking steroids for his UC right now? If he is, steroid rage is real and it is horrible. I can't imagine what it is like to be on the receiving end of it, but I can tell you that I get very over the top with all my emotions when taking steroids. UC is a really terrible disease and it can take the joy out of life very quickly. Therapy would be good too. Hope you get things sorted out.
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