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Crohn's Disease Forum » Support Forum » You Are Not A Burden!!!


 
11-01-2013, 05:59 AM   #91
DustyKat
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How are you going Sa-Sa?

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11-19-2013, 01:43 PM   #92
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I am glad this thread is out there. I have had Crohn's for 13 years. Recently we found out my Crohn's has spread and is worse than it has been in years. I usually play down my symptoms to my loved ones. Lately, I feel pretty bad most of the time. When I do talk to my parents about it, they say they are sorry, but it seems like they do not understand the full turmoil I am experiencing. It is like they have heard this all before. A lot of people do not know the right things to say when you are feeling bad, but sometimes I wish they could be a little more understanding that when I say I am in some pain and not feeling well I actually am hurting and feel terrible. I know they have been dealing with my side effects for many years, but they didn't stop when I moved out. It has left me feeling a lone during this hard time.
12-01-2013, 09:40 AM   #93
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Hey! i'm new on this forum but it didn't take me long to feel more welcome on here than in my own home. I not only feel like a burden, i am a burden and my family avoids me all the time. I am so happy to have found a place where i can go and feel not only welcome but understood
02-24-2014, 11:10 PM   #94
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If only I didn't think of myself as a burden. I've been dating my girlfriend officially for almost two months. And after the first month I went into a flare. She has been through everything with me through it. Even went when I needed to take a blood test. I hate having her worry. I hate it. I feel as though she deserves better than to be with a sick guy all the time. She cooks for me (when I could eat. Can't eat much anymore) worry about me. Even her family has taken me in almost like a son. I just feel guilty for putting them all through all of this. But she's been amazing the whole time.


02-26-2014, 05:29 AM   #95
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I understand what you are saying and can only say this to youÖ

I do not have Crohnís and often think and feel that I know I will never truly understand what you are going through. That I will never fully appreciate the pain, the frustration, the fear and the heartache. Short of having this disease myself how can I?

BUT I can speak for those of us that are the loved ones of those with IBD. I know you wonder why we stick around and what the hell we see in you. And it is because we donít see what you see. We see the whole you not just the Crohnís. Yes, Crohnís is part of you are but it isnít who you are, you are so much more than that. If your girlfriends family has already taken you in as one of their own then that tells me you are pretty damned remarkable human being.

Donít feel guilty mate, if they didnít want to be there they wouldnít and never underestimate what you bring to the relationship.

Dusty. xxx
02-26-2014, 09:10 AM   #96
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Thanks man. The fraternity president just really pissed me off when he texted me. He should know me better. He should know that if I'm not going to class I have a darn good reason and I'm doing everything I can.


02-26-2014, 09:11 AM   #97
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Whoops commented on the wrong post. Sorry for the confusion. But doesn't seem too hard to understand.


03-07-2014, 06:33 PM   #98
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Tears in my eyes and on my cheeks...
What a wonderful post Dusty, thank you so much for it!

Last year I was diagnosed with crohn's, have been very ill for 2 months, and all this time my family and friends stood by me. They came to the hospital to keep me company, helped me take care of my animals, made sure I didn't feel alone, took me with them to any party and drove me back home when I was tired...

But eventually I recovered and life did go on, until beginning of December when the problems of having awful pains after eating started. After a lot of scans, blood test and scoping's that didn't show why I was hurting I started questioning my own sanity, but my friends and family never doubted me... Still lying on the couch, unable to do anything, but finally found the cause of the pain yesterday and probably I will need an operation.

And once again , since the first day I got sick this time, my phone rings every hour with people asking me what they can do for me... My brother and parents make sure I never have to go to the hospital alone... The stables of my horses are getting cleaned every day... They all make sure I never feel alone....
And during all that time I am feeling very, very guilty that they have to do this for me. I love these people so much, and feel like the luckiest girl in the world because they are my family and friends!
How can I ever thank them for what they are doing for me...?
03-07-2014, 06:38 PM   #99
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Only thing I can think of is never stop fighting to get better and stay better. Never give up.


03-08-2014, 05:08 AM   #100
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Just do what I imagine you are already doing lente, tell them you love them and thank them for being there. The spoken words of love and appreciation are payment a thousand times over.

They love you and want to be there for you lente, it isnít something as a loved one that we consciously think about, it isnít a decision we have to make because there is only one choice to makeÖto be there with you and for you. We know that should the tables ever be turned you would do the very same thing.

Please donít feel guilty hun as you have nothing to feel guilty about. You didnít choose Crohnís lente, it chose you.

Dusty. xxx
03-08-2014, 01:06 PM   #101
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Easier said than done not to feel guilty. Missing family events. Missing brotherhood events. Missing classes. Barely being able to eat. In pain all the time and resorting to basically laying in bed most of the day because it's easier than sitting up and putting stress on the muscles over the intestines.


05-02-2014, 06:27 PM   #102
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Dusty. That initial post was Divine, thank you!!

I love my job but was asked to take a leave of absence. I suppose I just couldn't hide it anymore. I've had Crohn's for 15 years and have always been able to "pull it off" as far as family and work. Until now. I'm scheduled for an illeostomy and can't help but think in the back of my mind it's like a blood offering to appease the gods. Anyway, thank you.
05-02-2014, 06:52 PM   #103
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I am so sorry to hear that it has come to needing surgery.

I hope all goes well and leaves you feeling much better than you are now. Good luck!

Dusty. xxx
05-31-2014, 04:20 PM   #104
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I've never read this before, but since my recent bout in hospital and surgery, I always felt like a nuisance. One day my aunt told me, "the only one who thinks you're a nuisance is you!" I learned how loved and supported I was!

Thank you Dusty! Your children are blessed to have a mother like you!
07-21-2014, 02:57 PM   #105
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Hey, Dusty, so I am new to this site and freshly diagnosed with Crohn's, I'm 21 years old.

I am having a bit of trouble trying to get my mum engaged with my condition, she never seems to want to talk about it but when I do bring something up about Crohn's she is very short......

Am I just over thinking that she dos not want to know or the other thing i am thinking is that she is just as scared as me.
but I would still like her to be my mum and at least try and comfort me about things...

sorry for the waffling.

kind regards,
Kyle
07-21-2014, 06:37 PM   #106
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She is definitely just as scared as you, if not more.


07-26-2014, 07:57 AM   #107
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Hi Kyle and my apologies for the late reply.

Your Mum may be feeling a number things hun. Firstly, most definitely scared and secondly she may also be feeling guilty that you have the disease and she doesnít. Then there are feelings of helplessness and grief. As your mum she will go through the same sort of emotions you will which as the sufferer can be doubly difficult for you.

Please have a read though the grief thread if you havenít already done so:

http://www.crohnsforum.com/showthread.php?t=22520

Perhaps her not engaging is denial, hoping that it has all been a mistake and it will just go away. Or it could be that she is afraid of breaking down and crying in front of you if she gives into her feelings.

The main thing is, none of the reactions she is having are a reflection on you Kyle, they are response to what is happening to you. I know it doesnít make it any easier on you for knowing it but things should settle as she comes to terms with it.

Dusty. xxx
08-18-2014, 03:38 PM   #108
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Wow, thank you for this! I know I am a burden to my dad - he doesn't understand anything I go through - that's why I moved away from him bc he gets mad anytime I am in the hospital or sick.

It's so good to have a place like this to go to where we can all support each other!
I can relate, as I do not have support from any one person in my family or my partner. None of them seem to understand the ordeal it is to live with IBD. I was only diagnosed last year, I'm still very new to Crohn's, and I still don't completely understand it. My parents, my sister, and my partner all seem to look at me like I'm full of shit when I literally can't get up from my bed. It's mind blowing that they actually think I could be "faking" or "exaggerating" symptoms to get sympathy. However mad I feel about the situation, I almost can't blame them, as they just don't understand what IBD really is. I can't even wrap my head around it completely.

The real issue here, is if family members don't understand, how can others understand. I was enrolled as a disabled student in my degree program last year as a result of my Crohn's disease. Inevitably, my professors challenged me on every issue that arose because I "[didn't] look disabled. [I] look completely fine". These are the kind of stigma's that are very real and prevalent. It's hard to find the strength to be successful in life while living with a chronic illness and such a lack of support.
08-31-2014, 06:44 PM   #109
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I thank you for writing that, it has been on my mind for a week as I grow closure to the rainbow bridge I want to see so bad. I am a burden on my kids, family is non exsistant
09-08-2014, 09:53 PM   #110
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DustyKat is so sweet. The sweetest ever. Thank you DustyKat. I've never had anyone say all those nice things. My husband takes good care of me but my disease is invisible, no one else can even remotely understand. Anyways, who wants to go around telling people what a day in our life is like? It's not your standard water cooler conversation. I wish I could overcome the enormous resentment I feel for having this disease. I have a difficult time accepting that my body is failing me, attacking itself for no apparent reason. It's beyond me.
09-08-2014, 11:59 PM   #111
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DustyKat, I just read your initial post and some of the thread here and I am blown away literally - thank you for your words and the kindness. I have always been the caretaker and it has been a difficult transition - one I still haven't quite managed, to become the one requiring care. Next time I'm having a really bad day I will remember those words so again thank you.
09-09-2014, 12:36 PM   #112
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One thing people have to remember is your family, at least those close to you do understand. After time goes by, they simply don't know what to do and are frustrated, just as much as you and don't express it well.

When you listen to any of their misplaced anger, remember back when you first found out and were having hard times, I'm sure they were very supportive then.

I'm very quiet about what ails me with my family, and friends. But the ones close to me know, and educated themselves more than I did, I always just said its just this, named the issues and left it at that. Told them would be applying for disability. A few came back with "You can't be that bad off" or "Sounds like you're being a baby" and the ones that had educated themselves wailed into them like no tomorrow. I never even said a word. Now seven years later, the story is a little old, they are just tired of the situation, not you. Tired that there's nothing they can do or say that will make it go away, so they have misplaced anger they may even take out on you.
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09-13-2014, 05:32 PM   #113
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It makes me so sad when I read of what many of you have to deal with from the people you think you can most rely on. Some people never do step up to the plate and when it is family it makes it even more heartbreaking.

I know at times I become frustrated, angry and fed up but it is not with the person it is with the disease and I do my utmost to never display it to them.

I also know that I am grieving and I donít know if I will ever find true acceptance with the hand my kids have been dealt.

Thinking of you guys.

Dusty. xxx
03-02-2015, 05:34 PM   #114
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No one gets through life alone, we are here to help each other. Sometimes one needs more, sometimes it's someone else's turn, just take your turn and be glad this bunch is here, I sure am! We do it happily.
03-02-2015, 05:42 PM   #115
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What I'm currently struggling with right now is the thought that I will not be able to get physically fit enough to pass physical tests for police departments


03-02-2015, 05:59 PM   #116
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Oh, yeah, that's a biggy. I know they can be tough. It may not be your bag, but it's mine, so if you don't mind, I'll pray for you. Can you re-apply if you aren't the first time? My nephew is a cop and I know it's rigerous. Alll the best, m
03-06-2015, 04:37 AM   #117
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I'm close to benching 80% of my body weight now. Need to add about 30lbs to it and then get the running down. The running I just need motivation to keep on running once I get tired and want to give up. This time last year I was in the middle of a bad flare. Ended up going down to 100lbs. Which for me was only loosing 45lbs. Then I gained 70 and I'm the heaviest I've ever been. I'm on Humira and pentasa. Thanks to my girlfriend and her parents I put on that 70lbs. I was just skin and bones. Just wish I got on the lifting a little earlier on that weight gain this time. But just didn't have the energy to


03-15-2015, 03:53 PM   #118
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I can relate, as I do not have support from any one person in my family or my partner. None of them seem to understand the ordeal it is to live with IBD. I was only diagnosed last year, I'm still very new to Crohn's, and I still don't completely understand it. My parents, my sister, and my partner all seem to look at me like I'm full of shit when I literally can't get up from my bed. It's mind blowing that they actually think I could be "faking" or "exaggerating" symptoms to get sympathy. However mad I feel about the situation, I almost can't blame them, as they just don't understand what IBD really is. I can't even wrap my head around it completely.

The real issue here, is if family members don't understand, how can others understand. I was enrolled as a disabled student in my degree program last year as a result of my Crohn's disease. Inevitably, my professors challenged me on every issue that arose because I "[didn't] look disabled. [I] look completely fine". These are the kind of stigma's that are very real and prevalent. It's hard to find the strength to be successful in life while living with a chronic illness and such a lack of support.
Speaking from the side of being the loved one, it can take a long time to finally accept your loved one is ill and it will be a long time before they are "better".

My fiancťe was diagnosed 7 years ago and for the first few years I was an awful boyfriend when it came to Crohns. I didn't understand the disease, I didn't understand my fiancťes feelings, I didn't understand how it would affect our future. I had been really unfair on her for a few days and really upset her with my lack of compassion when she decided to give me a print out from the Internet that explained more about Crohns. It still took me a while to be the boyfriend I needed to be but that was the day I turned over a new leaf. I started reading up on Crohns a lot more. Im still no expert and I'm not the perfect fiancťe but I am a lot more understanding of her feelings, fatigue and chronic pain than I was even 5 years ago.

I know you think that everyone is being really unfair on you, please try and understand that they don't mean to. They don't love you any less. If anything they may be in some sort of denial or think you might wake up one morning and be better. I'm talking from experience. Once the penny drops, they will become much more understanding of how you feel and be much more compassionate. Just give them time.
03-15-2015, 04:18 PM   #119
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iiilca - have you given your loved ones anything to read or taken them to the doctor with you - perhaps it would help them to understand better. My husband is sympathetic, but he's got Alzheimer's. who knows how long that will last...
03-15-2015, 04:20 PM   #120
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LCAT - keep it up, it sound like you're doing great. I'm at the not much energy level, but sring has been trying to arrive and that encourages me to do more. just not the essentials, like a clean house. Oh well.
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