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09-08-2011, 04:01 PM   #1
DustyKat
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Grieving.

Well I have been very reflective these past few days which probably isn't a good thing! Hmmm, must be the Sarah effect . I don't know how many of you are familiar with the stages of grieving so I thought I would pop them in here.

They are generally used when someone has a terminal illness and since I work in palliative care I am very familiar with them, but are just as relevant to those with a chronic disease as well those who care for them. There are said to be 5 stages and although laid out neatly here people don't necessarily move through them in chronological order. It is common to move back and forth between stages and not everyone experiences all stages. I have copied and pasted the stages so look past the references to dying and more to definition itself...

Denial "I feel fine."; "This can't be happening, not to me."
Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death.

Anger "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?"
Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy.

Bargaining "I'll do anything for a few more years."; "I will give my life savings if..."
The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand I will die, but if I could just do something to buy more time..."

Depression "I'm so sad, why bother with anything?"; "I'm going to die soon so whats the point... What's the point?"; "I miss my loved one, why go on?"
During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed.

Acceptance "It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, the individual begins to come to terms with her/his mortality or that of a loved one.

I know with Sarah I moved through all 5 stages and did eventually come to an acceptance. It doesn't mean I like it any way, shape or form but I reached it nonetheless.

I had no denial with Matt and I think I am still moving between anger and bargaining. Acceptance isn't even on the radar!

I guess I felt the need to post this so that you could have a look and maybe see that a lot of the emotion you feel is normal, natural and just.

Dusty.
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Last edited by DustyKat; 09-09-2011 at 06:00 PM.
09-09-2011, 06:42 AM   #2
macdonald88
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Thanks for posting i have certainly gone through/going through everything you have mentioned apart the Acceptance i cant seem to get to this stage and i m getting really down again as i have been ill for a whole year, i thought i was getting somewhere this month starting the modulen then ended up at Hospital last couple of days and they think it has spread to my large bowel. When is it going to get better, i know you have to try stay strong but its sooo difficult
09-09-2011, 07:30 AM   #3
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I think it will be difficult to reach this stage when you haven't achieved remission so don't be hard on yourself hun.

This is what is difficult with chronic illness as opposed to a terminal illness. With a terminal illness of course the outcome is finite but with a chronic illness the future course of your disease is unknown.

Most may well eventually go through to acceptance after their initial diagnosis and first remission but the grieving is often revisited again with each set back and flare. Perhaps not as long lasting and intense as the first time but grieving nonetheless.

Dusty. xxx
09-09-2011, 08:28 AM   #4
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I went through that cycle when I was first diagnosed. And spent a lot of time in depression. Then when it flared back up last year after 6 years of remission, the stages started all over again. I'm back to acceptance again, but I think I'll probably cycle through the stages with every flare.
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09-09-2011, 05:44 PM   #5
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I think I am a little backwards. When I was diagnosed, I immediately accepted it, even with a smile on my face. Now I'm facing the depression. What's wrong with me? Is it weird that I'm backwards?
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09-09-2011, 05:55 PM   #6
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No hun you aren't weird!

Maybe it was acceptance straight up but maybe just maybe it was relief that you finally had a name for all that was happening to you and not really acceptance after all. Even denial can sometimes appear to be acceptance when deep down it isn't.

When you think back to your diagnosis do you think it may have been one of those?

Dusty. xxx
09-09-2011, 06:03 PM   #7
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I think I have gone through all the stages. I was quite content thinking I had reached the "acceptance". But...for some reason, I have jumped straight back to Anger ! I can't figure out why though...I just don't get it. Gab is so happy and doing so well.
I'm weird too I guess...unfortunately, the "anger" just cost me my job of 5 years this week. Never once had I ever been so much as verbally reprimanded for ANYTHING at my place of employment...the "perfect" employee per say. Then my boss really upset me and I let him know it, in front of the entire staff ! OOPS ! He told the owner of the business (who really didn't want to fire me at all !!) that it was either fire me or he was quitting!
I think I need to move back to acceptance ! LOL
Ayiyiy..I really don't understand all of these crazy emotions, but I do know that right now they are revolving around Gab's illness, but WHY ?? Why when she's doing so so well?
Ahhh...so sorry for the rant...this thread just touched me !
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09-09-2011, 06:17 PM   #8
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Oh hell T! I'm so sorry to hear about work...

You're not alone hun in feeling the way you do, I feel it too.

I don't know, when your child is sick you can account for the way you feel, their struggles are in your face and you understand why you feel the way you do but when they well and the emotions hit it is far more confronting and confusing.

I have thought about why I get pissed off when my children are wonderfully well and I think it's because deep down I know they are never going to be truly "healthy". I feel angry that they can never take the good times for granted, that at any time the fun, laughter and ability to do whatever their heart desires can be snatched away from them in heart beat.

I think them being healthy just rams home to us how fleeting it all may be and how very unfair it all is.

Dusty. xxx
09-09-2011, 07:48 PM   #9
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I have thought about why I get pissed off when my children are wonderfully well and I think it's because deep down I know they are never going to be truly "healthy". I feel angry that they can never take the good times for granted, that at any time the fun, laughter and ability to do whatever their heart desires can be snatched away from them in heart beat.
I think honestly that may be my problem...
I watch her be so happy and healthy and then I start thinking ...this f***ng disease is going to take it all away ! And then I can't help but wonder .. when??

I know I should take advantage of the good times, and I really truly try to..I do.
That's why I just don't get why my emotions are getting the best of me.

However, I have always been the type that when adversity rears its ugly head I am cool, calm and collected. Then, when it's over...that's when it always hits me out of the blue; when things are settled and smooth sailing!
So maybe thats it...maybe I'm just starting the "grieving process" now, since she has left for college and is thriving. It is my personal pattern after all...
Ahh hell...who knows ! LOL
09-10-2011, 05:02 AM   #10
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I think you are taking advantage of the good times T, it's in the quiet times that the thoughts come to the fore. Now that Gabs has moved away you have more time to think and you have the added worry of not being able to see her for yourself and judge how she is going.

When our kids are ill we have very little time to do anything but deal with the here and now let alone grieve. It's only when the dust settles that we have time to take stock of things.

Dusty. xxx
09-11-2011, 12:49 AM   #11
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No hun you aren't weird!

Maybe it was acceptance straight up but maybe just maybe it was relief that you finally had a name for all that was happening to you and not really acceptance after all. Even denial can sometimes appear to be acceptance when deep down it isn't.

When you think back to your diagnosis do you think it may have been one of those?

Dusty. xxx
You're exactly right. Where did you get so much wisdom? I am so grateful for it... and your kindness. You are an absolute Godsend!

And T, I am so sorry for your situation. I hope and pray that you can sort things out very quickly. You are a wonderful, caring person. I'm sure you'll find something soon. Hang in there, honey!
09-11-2011, 01:40 AM   #12
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Oh wow, thanks Jessi...

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09-11-2011, 02:30 AM   #13
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I think I'm backwards like Jessi, lol. Started with a sort of reluctant acceptance having been I
ill for months prior to diagnosis. Have worked back through the stages cos it hasn't disappeared like magic with meds etc. I think I still skip and slip about the stages like on stepping stones at the mo.
But Crohns has taught me that I took a lot of things for granted, including my health. And there are some very sick people on my ward, and I had a shopping spree yesterday.
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09-11-2011, 06:52 AM   #14
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I realized early on that I was moving through the stages of grief when EJ was dxed. I had reached acceptance with the crohns when we were slammed with the PSC dx. That really made my head spin!! I was reduced to a whimpering child for a few days. I don't think I've allowed myself the luxury of denial but I bounce around anger, depression and acceptance like a pinball!
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09-12-2011, 09:15 AM   #15
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Like Dusty said, these stages aren't "linear" and no one goes through them in a straight line. I know I have gone through all of them over and over and over and back and forth and upside down.......

I, too, had reached acceptance for quite a long time after I got married. It was like I was settled, so my body was settled - for a bit. Now I just bounce between anger and depression - and a little bit of hope thrown in there for good measure.

This particular theory of greiving that Dusty has mentioned was theorized by Elizabeth Kubler Ross (if anyone is interested in looking her up or actually reading her book). There are other theorists out there, but their theories still follow the same basic pattern.

Great thread, Dusty!
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09-12-2011, 10:49 AM   #16
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I was diagnosed with breast cancer and crohns within a week of each other last September. The cancer I accepted and had a double mastectomy but cannot come to terms with the tiredness and lethargy associated with active crohns. The only time I felt well was the last of each three week cycle of chemo. No doubt time will help but after a year I really feel fed up and would like my life back.
09-22-2011, 02:04 AM   #17
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Thanks for the great post DustyKat!
And hello to you too Jessi, I just want to make a comment about how I felt I was a bit "backwards" when I first found out my bf had Crohn's. It was something I accepted for a long time, but as I found out more and more about Crohn's, I have definitely shifted in between all the phases. Ie. It wasn't so much I said "why me?" but rather I was asking "why him? Why anyone?"

I've been through a bit of denial, a lot of anger, some bargaining, etc in no logical chronological order. And yet throughout all this time, he has seemed to be in the "acceptance" phase. And yet I feel so bad for thinking of these things (ie. anger) when I have a cakewalk compared to the pain he has to go through at times.

Maybe there is something wrong with me...haha...
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09-22-2011, 07:25 AM   #18
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Nah, nothing wrong with you hun.

So many wise and wonderful people here have often said it is harder for their loved ones than it is for them to deal with IBD.

I can't bear to see or think of my children having this disease, it is just so heart breaking...I well imagine that is the same way you feel about your bf...I think they call it love.

Dusty. xxx
09-29-2011, 04:01 PM   #19
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I'm stuck in the anger stage because my GI is stuck in denial.

Amazing how they can say, "maybe you have some rare cancer" yet are reluctant to say that Crohn's is likely the cause (they are so afraid to give me any medication/treatment).
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09-29-2011, 10:13 PM   #20
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I'm sorry to hear that Keona. My friend was diagnosed (not with Crohn's but Diabetes). She had to go to another doctor to get the diagnosis. Her original family doctor kept saying it was nothing and basically giving her no treatment, even after she said repeatedly Diabetes runs in her family. This went on for years. Finally she switched doctors, did a couple of tests, and guess what it was?

Needless to say she was angry for a long long time.

Hugs to you, hope things get better somehow.
10-01-2011, 03:24 AM   #21
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What a good discussion.

I felt like I was greiveing when my son was first diagnosed, and I guess I didn't give myself the permission to allow myself to do that fully. I suppose I didn't accept it would be normal for a parent to grieve. I've definitely been through some of the stages you mentioned.

I wonder if I'll go back through them each time there is a bad flare up. Over the last year, I have spent some time worrying that I won't cope every time he gets sick. I guess I will cope, but perhaps I need to be open to the idea I will probably feel some grief/ anger etc each time he is really sick. And not be surprised if I feel like that.

I has been really useful for me to think about this and perhaps expect that some of the emotions will keep coming and going.

thanks,
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10-01-2011, 07:48 AM   #22
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My partner and I have been planning/talking of trying to have a baby next year and I am really struggling to come to terms with the possibility that I may pass on my Crohn's disease. It's one thing for me to deal with this disease but the thought that my babies might have to go through what I am just seems too much.

So just from a hypothetical situation I thinks it would be harder for the support person than it happening to me.

I recently had some surgery done and over heard my mum say to my doctor that she wish she could take my place and go through all this instead of me. It broke my heart that she thought that. I was so consumed with what was going on with me that I didn't even think that it might be upsetting to my mum (she acts so strong in front of me - always telling me I'll be fine).

So it really does impact EVERYONE.

So stay strong but for those "support" family and friends don't be afraid to let us know how your feeling too.
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10-01-2011, 08:35 AM   #23
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@Wendy...Oh man, just what you don't need...doctor denial...

@Lily Rose...I think I revisit these feelings of grief each time my children have a setback. In some ways though I don't think they ever really leave me. Sure, I have my black dog days but it goes deeper than that and I do believe it is because the future is unknown, it is a disease without a beginning, a middle and an end.
I have wondered myself lately how I reconcile myself to having both of my children diagnosed with CD....
How do I live and function with fear and uncertainty simmering below the surface, forever being poised for flight like a gazelle, will worry overwhelm me, do I have the capacity to do all this for two children.
It is bloody hard at times but I know I will get through, as parent's we all will, they are our babies and you always find that extra bit of oomph when you least expect it. And thank goodness for this forum!

@Kimmy...I say the exact thing your Mum does, I tell ya, what I wouldn't give to have this disease and have it spare my children. Believe me, you aren't upsetting your Mum hun, not in that sense. You are her baby and always will be and that is an indescribable love, it is deep and raw and that is why she feels the way she does, not because of anything that is happening to you over which you have no control, no choice...

Dusty. xxx
10-04-2011, 02:21 PM   #24
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Jessi, you are backwards because you are from Utah... *poke*

Thanks for the thread Dusty. I have only been on the forum for two days.. I have been moved to tears more than once by reading what others have posted. It hits SO close to home to read what others are going through. From the fear, to the acceptance, to the suffering of loved ones involved. One reason I think that those of us who are afflicted deal with this better (poor choice of words) is because, we simply have no choice. Our loved ones, and caregivers have to make a conscious decision to be supportive, involved. Even parents of sick children have to decide to be there for their kids, even if they believe they have no choice.. they do.

I am grateful to have stumbled upon this forum yesterday.
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10-07-2011, 06:03 PM   #25
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I have been thinking about this in relation to chronic disease and I wonder if acceptance is saying I acknowledge that I have Crohn's and that is it.

I hear people on TV say that they forgive the person that murdered their loved one and I think to myself...how can you! But is that the same as acknowledging you have a chronic illness? Do the same survival mechanisms kick in? If you don't reach that level of acceptance and acknowledgement does it become so all consuming that you barely function?

I have accepted that my children have CD in that light. I have to or I don't think I would be any use to anyone. I could quite easily curl up in a ball and cry and endlessly question why but where does that get me or my children. But that level of acceptance, or perhaps acceptance fullstop, when it comes to this disease is just that...Hi, I'm Mrs Bloggs and I have Crohn's. It doesn't stop you bouncing between the stages on any given day, it doesn't stop you from being pissed off, it doesn't stop you from wishing you didn't have it, it doesn't stop you from feeling overwhelmed, it just says I have Crohn's.

Dusty. xxx
10-07-2011, 06:21 PM   #26
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When I was in grief counseling I was told that everyone goes through the stages at different times and sometimes they even return to different stages at different times. And they often overlap. It is very complicated and fluid. Also the way people experience each stage is different. It is very individual. The only thing is that everyone will experience each stage at some point.

I think the most important thing is to experience what you are experiencing. You don't have to pin it down or label it or make sure you're progressing or worry if you're regressing.
10-08-2011, 03:42 AM   #27
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I was talking to my husband about this the other day! Wow!

I have gone through all of the stages with my illness (accepting I have something, whatever it may be at this point), and I know I will go through it again when I figure out what it is.

My husband has not gone through all of the stages yet. He said to me the other day "I'm grieving, ok? I will always be grieving over this, for the rest of our lives". It really bothered me, and I realized something...he shouldn't be grieving always, right? He should accept this at some point, and the grieving process should stop. He has been very negative the past year over it, and I'm wondering if he will ever try and accept it. *shrugs*
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10-08-2011, 05:26 AM   #28
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Unfortunately it's hard to say what level of acceptance he will come to but I think what makes it very difficult for you both at this point is that you are undiagnosed. I guess it is hard for him to reach acceptance when he doesn't know what it is he is accepting.

Your level of acceptance to me is what I was talking about in my last post. You need to come to some sort of acceptance in order to function and carry on, if you don't then you shut yourself away.

With chronic illness, as opposed to terminal illness, the grieving may come and go with the flares and remissions. For all intents and purposes it isn't at the forefront but it lingers in the shadows waiting.

In many ways I don't think I will ever truly stop grieving for my children and what they have/will endure. It doesn't consume me and I do accept what they have but the feelings that come with grief...anger, bargaining and depression...go a long way to explaining why and how I feel some days. It certainly isn't everyday and now that they are in remission those black dog days are fewer and farther between but the main thing is it is okay to feel like this and recognising that is half the battle.

Dusty. xxx
10-08-2011, 07:58 PM   #29
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I have been dealing with so much anger over the last few weeks. From the refusal to treat letter, to my wife's own preoccupation of what she isn't getting from me (as a result of my illness) with regards to intimacy, and affection.

I have explained to her SO many times, that I have an illness that has robbed me of my life, and that I am doing my best by her. Still, when I get depressed, and sad about what I am dealing with, she turns it into something along the lines, that I don't give her what she wants, and that I am distant.... Well no SH!T!! I am afraid of the upcoming op, as well as the seeming lack of understanding in the medical community with regards to Crohns. I am depressed that surgery is not the answer, but merely a bandaid. I am angry that I am unable to please my wife, even though I work through the abuse that comes from a spouse that doesn't seem to get what I am going through, or thinks that I am faking it to get out of doing something... WTF?? SERIOUSLY!?!?! Sometimes I just want to put a bullet in my head... The problem with this, I have 2 children that need me. I fear for what they would have to go through with their mother if I wasn't around.

All of this is depressing. And no, I won't be putting any bullets in my head. Not that I don't daydream about it...
10-08-2011, 10:27 PM   #30
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Depression and anxiety are becoming increasingly recognised by the medical profession as affecting at least 25% of IBD sufferers. It's not hard to see why, ay Slim? As if coming to terms with this disease isn't hard enough but to have to deal with the offhand remarks and lack of understanding of loved ones and friends, as well as the community at large, well isn't that the icing on the cake!

If ever you needed a reason to go on then your children are it. Sometimes it's hard to find reasons within ourselves to continue on the path that was laid before us but look into your children's eyes and you will find all the reason you need. You will endure because your children need you just as I endure because my children need me.

Dusty. xxx
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