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Losing control

December is usually my worst month emotionally and so far it hasn't let me down. Today was really hard though. My Aunt called to speak with my Mom and she started asking about me and what I've been doing to try and advance my appeal with the insurance company and it quickly devolved into a shouting match between my Aunt and Mom. At one point my Mom responded with, NO HE DOESN'T WANT TO FEEL LIKE THIS! .. I didn't hear the other side of the conversation but that really hit a nerve with me. Then to top it off my Mom, in near tears tells my Aunt that she thinks about my illness every day and that we're doing all we can.

I feel so damn responsible for this (because I am). I feel like a huge fscking burden and even though it's not my fault and I'm dealing with the hand I was dealt, this type of stuff creeps into my head over and over and I can't seem to get past it. I feel like I'm dragging my family and friends down this huge abyss with me and it's not fair to them. I try and put my brave face on and smile and pretend nothing is wrong but so often when I'm alone I just burst into tears because I feel like it's not even worth fighting anymore. I fought and fought to get a diagnosis which I ended up coming up with, I don't have the energy left in me to do the hospital or insurance companies job of dealing with this appeal. I feel like I'm doing all I can but that some people feel it's just not enough. I have nothing left to give at this point.

Thanks for listening.
 
Sorry to hear you sre still having a rough time Drew! Time of year just makes it worse eh?
I have just had my Xmas holiday plans cancelled (going away for 2.5 weeks to stay with my brother and his family) because my sis-in-law's Dad just passed away and she is flying to America with the baby to spend time with her family. No point me going if noone is there but my bro who is working through! It's gotten me a bit down, but these things happen and I feel selfish even thinking about myself at this time!
So, a quiet one for me with dad and my other brother at home. Ah well.
I hope you manage to find some joy over the holiday season. It can be a hard time at the best of times.
Take care
(((HUGS)))))
Shaz
 
what you're feeling, Drew, reminds me so much of how i used to feel all the time, and how i still feel sometimes. i've always hated being 'the poorly one' in the family.. and i'm sure people get fed up of hearing the truth when they ask how i am.. guilt is one thing we don't bargain for when we find out we have something like Crohn's, but it's there - one of the silent but nasty symptoms :(

thing is, none of this is your fault. that is what you have to keep in mind, and also it's so good to hear your mum is totally understanding and fighting your corner for you - it would be a hundred times worse if she wasn't.

is there any kind of support available to you, someone who could take on board these issues such as insurance etc, and do the work on your behalf? like a disability group, or church-related social workers... or even a department at your hospital? it's worth asking around.

just try to keep your head up.. i know it's not easy right now.. but these hard times will pass. ((hugs))
 

mwb3779

Kitchenhawk
I feel for you Drew. I really do. I moved back in with my parents because of this. I feel the burden. Same thing I tell myself when I feel down I'll tell you now. No matter what- Its not your fault. You will be better. Your parents love you so much, they will always love you no matter how broken you feel.

My thoughts are with you.
 
Aw, man hugs buddy, you've fought the good fight to get that diagnosis Drew, it's in you to tough out whatever else needs to happen, even if it's someone else giving you a hand with the insurance appeal/battle type stuff, or it's just getting the strength to hold your head high. I feel the same way, but the guilt is more about my fiance's status, and how "our" lives would be so different if this damn disease never grabbed on and held tight. The fact that these loving people stick with you, and your mom is behind you, your dad is there, your sister is there for you, that makes it less of a burden. The love they have is more than enough to compensate for any guilt you even may THINK you have at a moment of weakness. I think the support they show demonstrates that whatever they feel inside, the love prevails.

It's cliche, but try to see the good in this month, a Christmas with some answers for once, you have a battle still, but at least this December is a month of gained knowledge.

/Man hug :)
 

My Butt Hurts

Squeals-a-lot!
It's not your fault. There is nothing that you could have done differently to avoid this. You've been very proactice in seeking a diagnosis, and seeking treatment. Right now the insurance company is the problem, not you. It's not your fault in any way.

You're not dragging anyone down. People are here for you, and you have to ignore the people who aren't. If you have 10 or 5 or even 2 people who are behind you 100%, that's better than 100 people supporting you just partially.

You're not a burden to your family. You're still their baby, and they will do anything for you. Of course your mom worries every day - that's what moms do. But she is there for you and will be until you win. She wouldn't have it any other way. She's not upset at you, she's upset FOR you. It's completely different.

You can't let ignorant people affect how you view yourself. If your Aunt has never had an incurable disease or an insurance fight, she can't know what you're going through. Some people don't have the capability to sympathize I guess, so she is one person to ignore at this time in your life.

I believe in you Drew. You can keep fighting. You've done amazing so far, you'll get that infusion and then this whole fight will have been worth it.
Always thinking about you.
 
Im sorry you feel this way Drew. I have the same thing about putting on a front and then when im alone I cry. Try not to feel bad about what happened between your mum and your aunt, as far as I can tell she deserved it and maybe she will feel bad now and appologise soon.
And it is worth fighting still. Do you honestly want to stay feeling like this? The only way you can feel better is if you continue to fight! This disease is a bitch. Dont let it have it's own way all the time.
Hope you start feeling better soon.
x x x x x
 
I'm sorry you are having a rough time of it Drew. Everyone has already said what I was going to say - that it is not your fault, that your parents love you, that it is inherently your Mom's job to worry about you (I've tried to get my Mom to stop - it just DOESN'T work - in the DNA), and that your aunt just can't have a clue because she has never walked in your shoes. Know these things in your heart, know that you are loved, know that you are a good person who deserves help when you need it - and it sounds like you need it! It'll be ok buddy.....give it some time.
 
It is NOT your fault Drew - you are ill! Your aunt doesn't have a f%$king clue! Keep fighting dude - I had to move back in with my mother at age 34 and I had lost my husband, my home, my job, all my savings and a wee bit of my sanity...all because of this f%$king disease. But, I remember laying there one day and thinking I have two options really - 1. fold my tent - I can't do this anymore or 2. KEEP FIGHTING! I KNOW you want to fold when you feel so awful physically AND emotionally but you CAN keep fighting and things WILL get better!
 
Thank you everyone. It really does mean the world to me. I just feel like I can't catch a break once in awhile. I've always been hard on myself even pre-illness to succeed and be successful and this really put a huge fscking wrench in things which weren't exactly going perfect to begin with.

I don't blame myself for being sick and I really don't blame anyone for being frustrated at the pace and time it has taken to get to where we are with things right now. What I do hate though is that I've never worried about "me" as long as it didn't affect anyone else, I guess it's really hard to explain because it is such a deep psychological thing. I just hate having people who care about me, my parents and my sister who lives in Japan feel so helpless and in terms of my parents, they've seen me at my worst and to see them hurt inside to see me in pain is just an awful feeling that I want to be able to fix for them but I can't =\
 
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