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I've had and extremely aggressive case of UC since the age of 16, I am now 28. I have had so many surgies I frequently just lose count. My family has been there for me a lot in the hospital, and has let me stay with them while I'm on disability and can't work. However, they have never been actively involved in learning about my disease and being there for me. Even as a teen, I was the only one trying to research my disease and doctors. It's weird, on one level they are there for me physically when I have an emergency. However, on another level, I have felt completely alone in this since I was diagnosed as a teenager. Am I wrong to want my family to take a little more interest in this? I don't understand... When I tried to express my feelings, they got defensive and acted like I was just being selfish. Maybe they are just so desensitized to all of this now, and it's too stressful for them to think about? Idk... I feel so sad about it though, and with my disability/health insurance situation, I still need to live with them. What can I do? Does anyone have a link, or something I could send to them to read maybe?? I can i revive my families empathy after about 12 years of surgeries and hospitals? Please, any advice is appreciated. Thank you

- Erin
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As a grown-up who was once the sick kid, I can really empathyse...I do not know how much my parents felt or were involved in my disease or illness when I was as a child (obviously when I was a baby it was all them) but as a teen they let go of it and by the time I was 16 there was no one to hold my hand or to walk me though 18 when I had my k pouch done they were just friendly visitors and nothing more.
My dad blamed me a lot for my disease and used my diet or lifestyle as a scapegoat for why I was still sick. My mom blamed me for distroying her life.
the bottom line is that some parents cannot face their children's illness or deal with it...they do their level best when we are young and not in control but once we are up and running with it they drop the ball.
For some it is guilt turned inwards 'what have I done to make my child this way', for others it is selfishness, 'why am I being punished, what did I do to deserve this', forgetting that it is the child who is suffering in their body and not the parent...some it is self centeredness and we are just interupting their plans.
Not many parents are truely disinterested but many are way over their heads on this one. They cannot fathom having to deal with the disease and all of its gory details and requirements...and some are just bloody oblivious.
It is unfair to add unsensitive parents to the list of horrors that this disease throws at you but sometime you just have to pick your own family. Friends who understand, people who have suffered or gone through the same pains...and sometimes you just need to parent yourself and forget about the others who couldn't give a dime about you.
Hope that this helps
I'm not sure about your parents but this disease is quite daunting. Maybe it's just too much for them to delve into it. The fact that they're always there for you when you have surgery or need a place to live says a lot. My daughter had thyroid cancer and I started researching it online. It scared the bejeebers out of me and I had to stop reading. Maybe that's what's going on with your family.

Perhaps you could write down your thoughts and feelings in a totally non-confrontational way and give that to them. BTW - I don't think anyone in my family really knows or understands the totally of what UC/j-pouch entails but they're always there for me.

I hope you can work out what you need.

kathy Big Grin
I am feeling much the same. I was sick as a child so needed more attention so now dealing w/this since 18 it has been difficult on my younger brother even though he will not say that only that he feels I didn't grow up in the real world b/c he took it as me being spared by world for being there for me but it was b/c of my sickness/not being favored. Husband has been around a lot of sickness growing up but he is very healthy. I KNOW it must be very difficult for one to understand b/c I go through it/don't understand myself. since my situation in the first yrs. were a lot more mangeable than now I was able to do a lot more. Now I am having problem not being able to handle not being able to do as much so I stress over it. Yesterday I just made myself get some things done/by grace of God I did but when hubby asked me about something today I asked him no way today but maybe tomorrow. One thing I know even in good circumstances marriages need better communication b/c most of the time when things are said other one takes it in different way. Trying to get him to understand there is a difference in not wanting to do something/not being able to. He also has a quadrapledic daughter/won't go through story but I try to let him know at this point I don't know exactly b/c different circumstances but do not what it is to be limited to what one can do but unfortunately her meds. have seem to add to her doing less so unlike me looking fine I struggle but not evident. I don't ask anyone to do anything for me/don't won't anyone to feel sorry but understand more issues than seen on outside. I have always put others first/now at point not that I don't want to I can't. Tried to get her involved w/different thing/one she is doing but she does not want to be around people in her similar situation b/c makes her feel more something is wrong. I am so sorry and would do anything to make things better for her but I have realized she needs to take more initiative to do things. we try to have her over to watch/movie/eat/she normally falls asleep. wks go by so fast/husband wks. a lot. Is it bad of me to think having this every wk creates more stress. use to plan what we are having but no longer. watch movie while she sleeps/then have to repeat what she missed or wait till she awakes. There are a lot of things I can no longer do and don't expect ones to change things for me. Some things can not attend w/them and instead of looking at it, I would love to but more stress on me. If I take phone off hook to try sleeping(having to do when body will allow) mom tells brother I am controlling. have been to several counselors/I do not know the answers/can no longer trying to find them on my own. Is it asking too much to ask husband lets do things together. I can no longer do all the thinking. Oh well, much too long already. People think I don't go anywhere much b/c don't want to so I don't get to spend much time w/mom since married b/c I believe God first/spouse children/everything else will follow. I am putting it in God's hands but know God uses other people to help so why I am replying. I NO LONGER KNOW WHAT TO DO. counselor said have husband go to support group here but so far not finding one. difficult enough for me to handle not being able to do what I use to mananage so feel useless/guilty. Bottom line. how does one get others to understand other than when ending up in hospital. not choosing how things are it is what it is and I have to except. some times I think just need to let nature take its course
well lost what I added/all I know is I don't have a clue to go from here. Searched for answers/made changes I can. Asked to do life together. I understand difficult for my husband but he has to understand he has limitations. I understand more than most b/c of my situation. I did not try to get pregnant again b/c I could I wanted to but b/c I knew could not take care of child each day. would like to be able to raise nephew if something happen to his parents and hurts so much that I can't even say I will. I can not do things b/c I don't want to but b/c I can not. don't know how to get others to understand.
I am sorry that you are feeling like you are being misunderstood. I am sure you know that much of what you describe are symptoms of depression, since you have been in counseling. I am also sure that your therapists have told you that you cannot make others understand or change how they respond to you. You can only control your own actions and try to control how you allow other people to affect you. Yes, I know, easier said than done.

You are correct, I think, in your priorities. You cannot put other people ahead of yourself and your family unit. If other family members and friends cannot accept that, then it just has to be their problem. Unfortunately, it seems that quite often, families (and parents in particular) can lay on the guilt and make you doubt your motives. But really, it IS THEIR problem, not yours. This is especially true when they know that you struggle each day with your own physical limitations.

How not to feel useless and guilty? I don't know. One of the many problems of having invisible disease. Depression is a "pile on" too, because it just makes a bad situation worse. Hopefully, you can find your way out of this funk and find joy in what you can accomplish, and not focus on your limitations. I have had to cut people out of my life who were negative and demanding. It is hard, but sometimes necessary.

NONE of us are getting any younger, so we all face limitations, disease or not! Take care.

Jan Smiler

My daughter has been sick since 2008 and I would trade places with her in a heartbeat if I could. I get so frustrated in that I am doing all the reading and searching for answers. She will not discuss her health with me.  She lays sick in bed, hospitalized, on what ever meds her doctors decide to throw her way or don't throw her way. And she does no reading or research into her own disease. Her GI has not shared with her or us, any "life" plan-how to take care of yourself in a way to try and avoid ending up in hospital. They have not created a relationship where they get her into their office at start of issues, nor do they prescribe over phone or give her medication as a proactive approach. I am so frustrated!!! She gets angry with me if I ask doctors questions, and she is frustrated with my attendance at hospital. I try so hard to just sit, knit,....I am not adversarial....I am home today with migraine and heartache.  If I am there she doesn't talk to me.  At what point will she realize she can take some lead in her own life and disease? That she has the right to question her doctors, to research diets, to be proactive in her medical plans?  

I think people really cannot understand the moment to moment affects this has on us.  Our struggles don't always manifest optically - we don't "look" all that sick, so why don't we just suck it up and get back to work?  In times like this, I've found forums like this to be very important.  You can hear from people who understand you, and get little strategies you may not have thought of.  But mainly, just a place (like this forum) where people DO understand, is great.  Then, perhaps the help that your family *can* give, can be seen in a more generous light.


Hang in there.


Hello Evilone,

Stick with forums like this, and similar ones.  These kinds of forums have helped me many times.  UC/Crohn's usually doesn't read on the body the way other afflictions do, so you look "fine" to most people, even when you are not.  We find so many adaptations, that when we say we need assistance or even just patience, it doesn't LOOK like we're in trouble, so we get read as slackers, or needy, etc.

So, forums like this really saved me, several times.  We do know what you're going through, at least on some level.  I've gotten detailed, specific advice that really helped a lot.  If you can lean on us for things like this, it may be possible to grow to accept what your family *can* do.

For people who have never handled a chronic condition first-hand, it's difficult to process.  Not making excuses for them, but trying to help.  Small doses for them, perhaps.  Summarize in 3 sentences what you're handling NOW.  Then just leave it.  Yo u probably won't get an immediate response, but it could accrue over time, to everyone's benefit.

It seems to me you are handling a multiply difficult situation very well.  You already appreciate your family, and that is never wasted.  It's often a minute-to-minute process of hanging in there.  It sounds like you are making good decisions.  Come to these chat sites as often as you like.  In some bad times, I posted every day.  Always got encouraging replies.  People are here for you.

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