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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 stuff..at 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
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.
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.
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.
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.