coping when those around you aren't.

I am curious how others handle this.

I have a chronic physical illness. I am a member of forums for the particular form of it that I have. I found the place shortly after I was dx'd in June of last year.

For awhile it was OK, but lately I find myself unable to go there. I have the mildest possible form of the problem. Other than some intermittent pain and swelling, and the need to avoid certain foods, I take my two pills a day and get on with my life. You wouldn't know I even had this if I didn't bring it up.

I have quit going to these forums because everybody else there is in horrendous shape from the illness. Most of them are on disability because of it; they are almost totally nonfunctional and have had all kinds of physical horror stories from it -- uncontrolled seizures, heart attacks, vision and hearing loss, you name it. It can do all these things, but it hasn't to me (so far -- knock on wood).

Periodically, I need to go there to ask a question. But I feel very uncomfortable and VERY guilty for showing up only to ask a question. I feel even worse for going there because it's kind of a "who's sicker" competition, and I'm not sick! In fact, I'm doing so well that at my hematologist visit last week, he told me to come back in a YEAR! These folks are doing constant visits to assorted specialists, etc. It makes me feel bad for being "well."

I bet you were wondering when I was going to get to the point. Here it is: How do you deal with this? Because it happens to me here, too, and I feel guilty about that too. There is one forum in particular here that I find it terribly hard to go into when I'm feeling "well," because other people's pain makes me feel bad for doing OK. It's easier to commiserate, and to be helpful, for me, anyway, when my mood is in the dumper too.

Am I weird? Am I nuts? Am I evil and uncompassionate? How do I get past feeling terrible for being healthy? Anybody got ideas, pass 'em on.

CB

((((candybear)))) don't feel bad. it's great that you're doing ok. you are lucky. sure, i envy that. but, i'm glad and happy for you. i don't know what the condition that you have is, but i can understand how you feel. i'd probably feel the same way if i was in your shoes. i doubt i'm helpful in this and i hope someone else is more helpful than i am. i don't resent the fact that you're doing good with whatever dx that you have. i don't mind having you here in pc. i like having people who are doing better than i am here because they are helpful to me as well as those who are not. does this make sense to you? wishing you the best as always.

When I got my dx last year I too found a forum on it. And the exact same thing happened. I haven't been back. When I have a question I ask my doctor.

Almost everyone there was doom and gloom. Like you, mine is mild - for now. And I'm trying to keep it that way. I'm also trying to keep my emotions about it in check. There are days when I'm more depressed than others, and days where I'm better physically.

I get into a "survivor's guilt" frame of mind sometimes. Feeling guilty because I don't have it bad yet. But I have to get into gratitude quickly, or else I'll drag myself down the same road.

I had to leave when I started envisioning myself in bad shape, like half the people posting were. It was sooo depressing; I was in such fear of ending up like that quickly. Its hard to remind myself that most of them had had it for a number of years, and been dx'd before medical technology caught it early.

It may sound selfish of me, but I can get dragged down very quickly. I can have empathy for others, but I have to be grateful when I'm having good days, or else I'll fall into a pit of darkness. Its not always easy but I try to make the best of my good days and reach out when I'm having bad days and let people help.

My neurologist told me the best thing I could do for myself is not read stuff online. So I don't. I also have to be careful when people try to give me medical advice. All our bodies are different, so we all react to our illnesses differently. I have to keep my medical care between my doctor and myself and try not to let info on the net get me down. So I don't read about it online - at all. Unless its a fund drive for medical research.

I hope I don't sound cold in this post....I just wanted to let you know I understand.


Rayna

Only that you aren't weird, nuts, evil or uncompassionate. Do you really think you're those things? If so, why? Is something from earlier on triggering those feelings? Sorry for the crap psychoanalysis, I could do better in a PM perhaps.

Coping? No clue.

((((((((((((( Candy )))))))))))))

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candybear said:
Am I weird? Am I nuts? Am I evil and uncompassionate? How do I get past feeling terrible for being healthy? Anybody got ideas, pass 'em on.

CB

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Evil, for sure.

Here is a quote from Rudyard Kipling (though he is supposed to be "bad" because he was a British Imperialist):

"You know you are a man (woman is OK too) when you can keep your head when all around you are losing theirs -- and blaming it on you."

sometimes I feel guilty being here. I don't have a mental illness. I come here for the friendships and to offer support when I can. I have had people ask me if I have one because I seem so normal. I don't think that should matter really if I am offering support and friendship. I have been thru alot or some of the stuff others here have gone thru and I feel that helps me to be able to listen and sometimes offer advise or a shoulder to lean on.

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bebop said:
sometimes I feel guilty being here. I don't have a mental illness. I come here for the friendships and to offer support when I can. I have had people ask me if I have one because I seem so normal.

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They ask you if you have a mental illness because you seem so normal?

Maybe people with a "mental illness" are people too -- just a short distance from "normal." If that's good...

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candybear said:
I am curious how others handle this.

I have a chronic physical illness. I am a member of forums for the particular form of it that I have. I found the place shortly after I was dx'd in June of last year.

For awhile it was OK, but lately I find myself unable to go there. I have the mildest possible form of the problem. Other than some intermittent pain and swelling, and the need to avoid certain foods, I take my two pills a day and get on with my life. You wouldn't know I even had this if I didn't bring it up.

I have quit going to these forums because everybody else there is in horrendous shape from the illness. Most of them are on disability because of it; they are almost totally nonfunctional and have had all kinds of physical horror stories from it -- uncontrolled seizures, heart attacks, vision and hearing loss, you name it. It can do all these things, but it hasn't to me (so far -- knock on wood).

Periodically, I need to go there to ask a question. But I feel very uncomfortable and VERY guilty for showing up only to ask a question. I feel even worse for going there because it's kind of a "who's sicker" competition, and I'm not sick! In fact, I'm doing so well that at my hematologist visit last week, he told me to come back in a YEAR! These folks are doing constant visits to assorted specialists, etc. It makes me feel bad for being "well."

I bet you were wondering when I was going to get to the point. Here it is: How do you deal with this? Because it happens to me here, too, and I feel guilty about that too. There is one forum in particular here that I find it terribly hard to go into when I'm feeling "well," because other people's pain makes me feel bad for doing OK. It's easier to commiserate, and to be helpful, for me, anyway, when my mood is in the dumper too.

Am I weird? Am I nuts? Am I evil and uncompassionate? How do I get past feeling terrible for being healthy? Anybody got ideas, pass 'em on.

CB

</div></font></blockquote><font class="post">

I think you are very entitled to receive the help and assistence you require at any given time. I consider myself well. I like to discuss my emtions and mood swings but i dont consider that makes me unwell. I am a humanbeing having human problems from time to time and I think that means we're all part of the "club"??

sometimes... i need to take a break from posting on mental health forums because i think posting to them is getting me down. sometimes... posting on mental health forums does get me down.

part of it is about... identifying with people who have similar conditions / diagnoses. then you see them really struggle and get to thinking about how you really struggle too. and there can be something of a downward spiral into a fairly bad place.

part of it is about... thinking about and reflecting on stuff that is 'wrong' with me. accessing the vulnerable feelings instead of focusing my energy on my work. sometimes that can be a downward spiral too.

sometimes i wake up in the morning and think 'i'm going to have a productive day today! i'm going to go to the library and spend 3 hours working on this paper... then i'm going to have a nice lunch in the sun... then i'm going to go to this talk...' and it seems like it is going to be a good day. then i think 'i'll just check my email and some boards' and by the time i've done that... my blood is boiling over some conflict and / or i'm in tears over something that really touched me and brought up all my little kid vulnerable feelings and / or i'm worrying about how to respond to someone and / or i'm spiralling down that big black hole. and... there goes my day, basically.

i think part of it is about... figuring out what is right for you. different people have different levels of involvement and i really do think that is fine. peoples levels of involvement changes over time depending on where they are at and i really do think that that is fine too. the boards are here to help, basically, and you need to figure how they are best able to help you.

one thing that helps me... is helping others. it helps because it results in my feeling like a decent and worthwhile human being. if i spend a few hours posting to other people and they seem to appreciate my responses then i get all warm fuzzy glowing feelings inside. but othertimes i really can't spare the time. or... i really shouldn't spare the time. if i try and spare the time i %#@&#! people off because i'm in 'work mode' aka 'analytic mode' because half my mind is on writing some critical paper and half is on trying to hear what people are saying... and i'm more likely to miss the mark and say stuff that i should be saving for my academic work lol. hard sometimes...

dunno. but i really don't think you need to feel bad.

i'm a bit caught with respect to my self concept. past diagnoses include: depression, anxiety, post traumatic stress, borderline personalitly, dissociative identity disorder. which of those do i want to take on board? basically... none. mwah haha i'd rather write something to undermine the whole frigging mess of self fulfilling prophecies and the bastards who thought it was a good idea to categorise me thus and prophesise doom and gloom. assholes. take that psychiatric bible :-p

(yes i'm fully %#@&#! crazy by the way)
;-)

and... its well past my bedtime.

zzz

((((Rayna)))))) Thank you. It's good to hear from someone else in the same boat.

(((((Fuzzy))))))) Yes, I often believe those things about myself, particularly the uncompassionate part, and often the evil. Nuts and weird come and go. I don't know where they come from -- probably from my excessively high standards for myself. I often feel I should be a better person than I tend to think I am.

(((((((((Be)))))) No need to feel guilty. You are a big support and a lot of fun. Part of my problem is that I feel like I should be more supportive to these folks who are worse off than I am with this disease, and yet it just depresses me to read the endless problems they have. Something to work on, for sure.

Good point, Mouse. Thank you.

Thanks, wickedwings and Alex. I appreciate that you've given me things to think about.

For the record, I have a relatively rare blood clotting disorder. There are a variety of clotting disorders, and I've been found to have a genetic mutation that predisposes me to clots, but this particular disorder is a leftover from my near-total bone marrow failure in 2005/06. One doesn't usually get it without having had some other medical issue to kick it off.

Like I said, I take my pills and I'm largely fine, with intermittent minor problems. The other folks on that forum continue to have clots and worse even while on the medication that is supposed to prevent clotting. Usually they have other disorders as well, such as lupus (which can coexist with this but doesn't necessarily come along with it). Many of them have family members with equally bad problems with the disorder, as it can run in families.

My family's fine, I'm fine, and it just makes me feel bad to read of all the horrible things going on when I'm fine. I feel guilty, and then I don't know what to say, and then I want to run. I think I'm going to take Rayna's advice and just quit reading stuff online!

(((candy))) You are not evil. Having times of stress and saying things that might be misunderstood or maybe even feeling non compassionate does not make you a non-compassionate person. We all have times like those, but our main core of who we are is still good.

I am sorry that you (and others) feel guilty at times. A psychologist I know would say something like, what part of your also being sick or depressed will help those other people feel better? Meaning, it's ok to feel better than another person. I haven't met anyone who really wanted others to be feeling poorly just because they do.

When you are feeling well, that's a good thing! To not be able to post to others who aren't feeling as well, I think is a common thing, too. Maybe it's a type of self-protection? Maybe it's that you can identify with what they are feeling so well but you are needing a break from experiencing it, too? There's no shame in that.

I know for myself there are times where I am doing ok, but not really well with my chronic pain, and find that I can't seem to say anything quite right because of the place I'm in. I try to find something supportive to say without saying anything that comes out negative and the words just don't come.

Well, I've rambled, but the bottom line is this: you're not evil nor non-compassionate.

Candybear,

That's a bit of a dilemma, and don't have any real suggestions, but I'm just glad you're doing so well.

EJ