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Old 02-05-2013, 12:22 AM   #1
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Trying to Cope With Illness Without a Diagnosis

Hello everyone. This is the first time I have ever posted here. I am a 49 year old male who has, over the last six months, been coping, for the first time in his life, with a serious medical condition. Perhaps the hardest part of the situation is the fact that I elude diagnosis. I put on a brave face and throughout this illness I have continued to work (when able) and tried, with less and less success to live a "normal" life. I continue to have real doubts about my survival and worry most about the possibility of terminal disability. Sometimes I wake up in the dark and feel more alone than I could have ever thought possible.

I have always said that I am not afraid of death and now I realize that I am. I don't know if this illness will kill me since, of course, I don't know what this illness is. This much is certain: I feel like I am slowly fading away. Bouts of serious illness are coming more frequently and with greater intensity now.

I ask all the wrong questions and keep hoping against knowledge that some doctor is going to pull a diagnosis and cure out of thin air. Sometimes I try to run away from being sick and work really hard to tell myself that I am feeling better. But it never lasts. I am not better.

Anyway, I don't know why I decided to post here except maybe because I sense that someone out there knows how I feel.

I hate to toss-out a list of symptoms, signs and lab results because frankly, I am not looking here for a diagnosis. Just for fellow travellers. If there are any out there I'd sure like to know.

Last edited by Administrator; 02-09-2013 at 11:12 PM.

 
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Old 02-05-2013, 04:01 AM   #2
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roxalot HB User
Re: Trying to Cope With Illness Without a Diagnosis

Pupplesan,
This is my first post also, as I am looking for support and hopefully answers. You are not alone! Feeling ill isn't fun and not knowing what's going on is painful and frustrating, especially when you don't have a diagnosis or a plan of action. The end of your first paragraph; followed by the second, really hits home. I'm wishing you good thoughts!

 
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Old 02-05-2013, 10:21 AM   #3
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Re: Trying to Cope With Illness Without a Diagnosis

There are indeed fellow travelers out there. Many of us with autoimmune disease know exactly what it is like as we can spend years with no diagnosis, or worse yet, being told that "it's all in your head, have some antidepressants" or some other tripe. And finally finding out that you have lupus or scleroderma or something else that no one has ever heard of and it doesn't have a cure and sometimes treatments don't work or there just aren't any treatments at all. It might could get debilitating or develop into something fatal. It will flare and wane. It can make for some very bleak moments. But you do learn to cope and you do learn to deal with uncertainty. Sometimes counseling helps, sometimes you just wake up and say "well I can't control everything and this new reality of mine isn't exactly what I had hoped for myself, but it is still mine to make of what I will." Sometimes you just roll over and hit the snooze button. You are not alone. I wish you (and roxalot!) the best and hope you find some an answers.

 
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Old 02-05-2013, 12:05 PM   #4
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Re: Trying to Cope With Illness Without a Diagnosis

Pupplesan,

Perhaps if you listed your symptoms someone might have some ideas that the doctors could have overlooked. It's worth a try! Take care.

Last edited by Administrator; 02-09-2013 at 11:12 PM.

 
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