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Family support?
- Thread starter Crohnadian
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Help Support Crohn's Disease Forum:
My family are actually pretty good. They tell me things they've heard about, and ask me questions about my meds and health, but accept that it's my body, and I know more about Crohn's than the lot of them put together. My boyfriend worries, and does get annoyed sometimes when I'm too tired to do stuff, but he pretends not to be!
I'm glad you're in charge of stuff now!
I'm glad you're in charge of stuff now!
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Well at first, I would have told you that I didn't have a very good support system at home because I used to fight with my family a lot on how to treat this disease. We still do fight from time to time, but with the recent progression of my disease I've been blessed that it's brought me closer to my family. They're always worried and asking about me, I'm the youngest child of four. I have two sisters and a brother. They're always doing what they can to help me and they've even done research of their own to do what they can. They also talk with others and have met others with crohn's disease and talk to them to see how they cope and how they are treating the disease. As much as I hate this disease, it has brought me some blessings.
I'm so sorry your family is not there for you as they should be. Perhaps they have a hard time showing support because they do not understand what you are going through? My family has been great, my dad said he is proud of me for pursuing this so adamently. Before when I would be sick and the doctor would tell me I was fine, I assumed doctor knows best and didn't try to pursue it any further. Now, when the doctor tells me this or that came back normal, I demand more tests. My mom is also very understanding about what I have been going through because she dealt with very bad stomach problems in her 30's and her brother also had half of his colon removed so she understands the pain i'm in. It's great you are in control of your own health, being your own advocate is so important.
DustyKat
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I'm so sorry to hear about what you are going through. 
My daughter was diagnosed with Crohns 4 years ago when she 14. I have been with her every step of the way and went to all doctors appointments with her, tests, advocated and effectively supervised all aspects of her care. This was something she wanted me to do. At the beginning of this year she moved away to university and of course my biggest worry was her health care. At first she still had me make appointments for her but she has slowly taken control of all aspects of her health needs which is such a relief to me.
Do I worry about it? Hell yes, all the time! She is my child and it is difficult to give up that role and the feeling of wanting to constantly protect her. At some point I have to do this and I have but I know there are aspects of her life that could be so much better controlled in relation to her Crohns but what do I do? As much as it scares me I have to let go and let her make mistakes even as far as health is concerned. I can't make her do what I want and if she doesn't make mistakes how does she learn. The most important aspect of my relationship with my daughter, as far as I'm concerned, is communication and I will always strive to keep those lines of communication open.
I can't speak for your parents but I have personally seen where too many parents internalise their children's problems and in doing so take things personally. Like your wish for control and independence is somehow a slight on them, you are rejecting them and all they have done for you over the years. My idea of raising children is that you prepare them in the best possible way to be independent, functioning adults. Perhaps over time they will see that you can manage and come to accept that they don't need to control every aspect of your life. I guess the only thing I would ask for as far understanding on your part is to appreciate that having a child with a chronic illness is so very difficult for a parent, watching the pain and struggle is beyond heartbreaking and makes it all the more difficult to cut the apron strings.
Dusty. :hug:
My daughter was diagnosed with Crohns 4 years ago when she 14. I have been with her every step of the way and went to all doctors appointments with her, tests, advocated and effectively supervised all aspects of her care. This was something she wanted me to do. At the beginning of this year she moved away to university and of course my biggest worry was her health care. At first she still had me make appointments for her but she has slowly taken control of all aspects of her health needs which is such a relief to me.
Do I worry about it? Hell yes, all the time! She is my child and it is difficult to give up that role and the feeling of wanting to constantly protect her. At some point I have to do this and I have but I know there are aspects of her life that could be so much better controlled in relation to her Crohns but what do I do? As much as it scares me I have to let go and let her make mistakes even as far as health is concerned. I can't make her do what I want and if she doesn't make mistakes how does she learn. The most important aspect of my relationship with my daughter, as far as I'm concerned, is communication and I will always strive to keep those lines of communication open.
I can't speak for your parents but I have personally seen where too many parents internalise their children's problems and in doing so take things personally. Like your wish for control and independence is somehow a slight on them, you are rejecting them and all they have done for you over the years. My idea of raising children is that you prepare them in the best possible way to be independent, functioning adults. Perhaps over time they will see that you can manage and come to accept that they don't need to control every aspect of your life. I guess the only thing I would ask for as far understanding on your part is to appreciate that having a child with a chronic illness is so very difficult for a parent, watching the pain and struggle is beyond heartbreaking and makes it all the more difficult to cut the apron strings.
Dusty. :hug:
I've been lucky. My older brother was diagnosed with CD about 5 years before I was, he didn't live at home, but my parents wouldn't take no for an answer about where he was going to stay after his first surgery. I was diagnosed with UC 2 years ago, and while I don't live at home, after I was released from the hospital after the first flare I stayed there for a week. They are supportive when they can be.
It's really my girlfriend who is the biggest help. We were together for a couple of years before the initial flare, she moved in almost a year ago, and honestly don't think i could have made it through the summer without her. She basically took care of me from May through to the beginning of August.
It's really my girlfriend who is the biggest help. We were together for a couple of years before the initial flare, she moved in almost a year ago, and honestly don't think i could have made it through the summer without her. She basically took care of me from May through to the beginning of August.
Cat-a-Tonic
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My parents try to be supportive, although my mother in particular kind of fails. My dad doesn't offer any advice, he just calls every so often to see how I'm doing and what my latest test found out. But my mother has somehow gotten it into her head that my problems will all go away if I go gluten-free, and that's all she ever talks about now. Even though I've tested negative for celiac (both blood test and biopsies came back negative), and even though breads & pastas are some of my safe foods, she's still got it in her head that gluten is the root cause of my issues. If I did give up gluten, I'd pretty much be on a diet of Ensure and bananas, so that's not going to happen right now. I wish my mother could just listen to what I'm saying, instead of trying to impose her opinion on me. I'm still undiagnosed which, to her, means they haven't found the celiac yet. I have told her repeatedly that if I've got celiac, it would have been found already, and if I had a gluten sensitivity, the times I get ill would correlate to when I eat bread & pasta - but she hasn't backed down from her anti-gluten stance.
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I was diagnosed when I was 16 and both my parents were with me 100%. I was in the hospital for 21 days the second time and my dad would drive one hour after work to come see me every night. I spent Christmas in the hospital that year, he even got me a little tree for my room. I still have that little thing to this day.
I'm 35 years old now and my mother would still go to my doctor's appt's with me. She passed away a year ago August. It's strange knowing that if I have to have surgery, she won't be there this time. She's always been there, pushing my pain pump all night long. She was amazing. I miss her so much.
I'm 35 years old now and my mother would still go to my doctor's appt's with me. She passed away a year ago August. It's strange knowing that if I have to have surgery, she won't be there this time. She's always been there, pushing my pain pump all night long. She was amazing. I miss her so much.
Hi Chronadian,
It sounds like your parents are just trying to do what they see is the right thing in their opinion. They probably feel a little helpless and it makes them feel better if they can control something. Unfortunately they are frustrating you by doing it.
I would suggest buying one of those little pill containers from the Pharmacy. They allow you to sort out your whole weeks meds. Maybe then you can explain to your parents that you can sort your meds in there and let them check it (to make them feel better). Then your good to go for the week and you will also know if you have missed any meds.
If I were in your position, I would talk to them, tell them you want to be more responsible and ask them for their advise (even if you dont take it). That way they still feel involved and needed.
Regards
Paul
It sounds like your parents are just trying to do what they see is the right thing in their opinion. They probably feel a little helpless and it makes them feel better if they can control something. Unfortunately they are frustrating you by doing it.
I would suggest buying one of those little pill containers from the Pharmacy. They allow you to sort out your whole weeks meds. Maybe then you can explain to your parents that you can sort your meds in there and let them check it (to make them feel better). Then your good to go for the week and you will also know if you have missed any meds.
If I were in your position, I would talk to them, tell them you want to be more responsible and ask them for their advise (even if you dont take it). That way they still feel involved and needed.
Regards
Paul
ameslouise
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I agree with that. I am so sorry you do not have the support you need at home. But... we are all here for you. While that is not a perfect substitute for a family that is there with you and for you, we'll do all we can to offer you support, and advice when needed.
I am lucky in that my family and my in-laws are amazingly supportive. My FIL had his prostate removed a few years ago and has big time issues with incontinence. He's the only one that truly understands what it's like to soil yourself and how devastating that can be on a person's psyche. So we talk a lot about that, and he is as glad to have someone to commiserate as I am. I work for my husband at our family business so I have great flexibility with my job. My hubber also comes with me to all doctor's appts.
Good luck to you - I hope you are successful in taking charge of your own health care and feel good with the empowerment that comes with it!
Take care - Amy
