View Full Version : Taking a poll... JUST because I'm curious

08-21-2005, 09:49 PM
I have one RL friend who has lupus... She's had it since she was 19 and is now almost 60... And we were talking the other day about how difficult it has been for me to ask for help when I need it with this thing... And she said: "I think that's because you're a "do it yourself" kind of person. I am the same way... I think a lot of people who have Lupus are... But, I realized I had to accept my limitations... You'll get to the point where it won't bother you so much."

So here's my survey question: How many of you are like me, the "anything you can do, I can do better", never asked for help, never usually paid attention to things having to do with my body, (colds, scrapes, anything that typically would just come and go, and never really thought about twice) almost obsessively self-reliant, I don't need anyone but me, type of person?

I'm kind of wondering if maybe there could be some kind of a corelation?

08-22-2005, 09:53 AM
(First of all, what does RL mean?)

Yes, I've been that way all my life, and it's been one of the reasons my friends drifted away. I was embarrassed to ask for help, and it turned out they were reliant upon me anyway and weren't interested in being the helper, only the helped, which I hadn't even noticed, that's how self-reliant I was. I'd never asked for anything before, not even an ear when I was troubled.

I've learnt to accept and even ask for help, but only recently when I was no longer able to do some things for myself. There was no choice.

I'm not sure if there's a correlation, but I do know that Lupus is, ultimately, a self-destructive disease. Our bodies attacking our bodies. Not like a virus, or an invader--if you were to ascribe it to a psychological type, it would be typical of someone who kept feelings to herself, didn't do alot of "Help me, I'm such a victim" stuff, and was stoical and private about her pain. Turned it inward, instead of acting it out. Some have called it a form of suicide, but that's the extreme end of the spectrum.

It's not the disease of a melodramatic person, typically. So perhaps, yes, there is a correlation. We haven't asked for help when we've been traumatized, or very ill with something else, and have managed to keep our being sick a secret until it became unhideable in one way or another. Instead of having a month-long cry when necessary, we got sick. In my work as a Healer, that's definitely a part of how I work--looking at the person's psyche as an indicator of what I'm dealing with and what I can expect in terms of self-help during the process of working together. I've certainly met people who were genuinely in love with being sick, and when a Healer meets such a person, she's wise not to even try to change that. But we're the opposite, and tend to deny that we're sick. My father died without realizing how sick I was, and that on the last day I saw him, I had not only Lupus, but had contracted pneumonia, too, due to being on Prednisone. He told my brother I looked really well and seemed to be just fine. I was stunned, as I'd even had a pain crisis while he was here, and had needed to go to the ER for treatment. Yes, he wasn't very observant, but also, I was keeping myself upright and alert for his sake, despite my condition. I took my medicine in secret, for example.

My father was secretive, but he was also a secret drama-queen, and every time he had even the flu it was a major deal. So his first brush with death was ultra-dramatic, and his actual death very flamboyant.

The problem with being so self-reliant, as you may have learnt already, is that no one ever thinks ahead on your behalf--they never worry about you or think that you can't handle what's going on. There's a tendency to not take your condition seriously because you are under-playing it. And no matter how many times you explain the "red Lupus mask" they see "rosy cheeks." Not until the circles under my eyes made me look like I was at death's door did anyone think to even ask me how I was doing. And since I could have a fever of 102, be in so much pain I needed Morphine (or had already taken some), be so exhausted I was nearly dead, all without anyone having a clue that anything was wrong (even on Morphine, I seem perfectly normal), no one ever tried to take care of me. I was too embarrassed to say how sick I felt, so I'd keep going. One night at dinner, in a restaurant in Ireland with a bunch of Firefighters from Dublin whom I'd befriended (including, believe it or not, Tom Byrne, Gabriel Byrne's brother), I had had too long a day and knew it, but I just sat quietly, trying to be okay, until I went suddenly grey (according to Tom), and then just silently fell over and out of my chair onto the floor! It sounds funny now, but then I was in an agony of mortification, horrified that I'd ruined everyone's dinner. I just wanted the Earth to swallow me whole, and when I got back to my B&B Kevin brought me in and handed me off to the landlady who took me up the stairs, changed my sheets, helped me into my nightie, while I sobbed like a baby, feeling so helpless and pathetic. She was very kind and matter-of-fact, and finally I was convinced that I hadn't ruined her life by needing a few minutes of her attention, but yes, it's awful for me.

I've never understood how someone could be a comfortably demanding patient, as so many are. My Dad was. He loved being the center of attention, even though he was sick. I can't stand anyone to see me, or even talk to me on the phone when I'm in bad shape. I've been in the ER having heart problems, and my way of coping is to be entertaining, making jokes, making everyone laugh and relax, because I can't let them know how frightened I am. But they know how sick I am, so they laugh, but they're aware. So I'm safe, which we're not when we're with people who don't realize how bad off we are.

I think, Sole-Singing soul-sister, that we're too self-reliant. It's not good to be dying in secret. Neither is it good to be dying and ready for one's close-up. There must be a balance, and learning to strike it is our particular challenge. We'll have to help one another.

And good question to ask. Don't forget to tell me, please, what RL means. Thanks.

08-22-2005, 12:25 PM
I'm right along with both of you about being self reliant. Lupus has been a very humbling experience for me and I am sloooooowly beginning to ask for help little bits at a time. The otehr day a coworker offered to make some tea for me because she overheard me saying my stomache was upset. My initial response wasto say "no thanks", but I stopped myself and said "that would be nice". It was a huge step for me. However, I'm still very uncomfortable asking for help. It feels foreign to me.

08-22-2005, 04:23 PM
After thinking it over, I don't know if I'd call my way of dealing with things self-reliant. I suppose that living alone in the mountains with too many pets and having no friends to the house for at least the last year would indicate that I do tend toward the isolationist side of things.

But I can absolutely turn on the damsel in distress vibe when I want to. And it's not like I'm some pretty little thing - I'm around 250 lbs, but when I want to appear as helpless as a kitten, somehow I still manage it.

I think it was my mom who told me when I was very young that sometimes the greatest gift you can give to people who love you is to need their help now and then.

Of course, the guys at work do seem more comfortable with me now that I'm weak and tired and they get to be all manly and lift stuff...

08-22-2005, 04:25 PM
OH! And Awi...I think RL means Real Life. On other chats I've seen the term 3D used to communicate the same idea - a person who you see in the real world as opposed to just chat with online.

08-22-2005, 05:47 PM
Hi SoleSinger,

I, too, am guilty as charged. Very self-reliant, almost NEVER ask anyone (even my husband) for help except the occassional jar I can't open. I totally agree that down-playing is good in some ways (I think it's what keeps us going as opposed to "giving in to it." ) But, on the other hand when we act fine, it definitely gets misconstrued as we are completely fine! I really get upset when I have to remind someone (usually my husband) ...remember, I told you my hips are really hurting, that's why I'm walking funny, or whatever -- a headache, or really tired. I don't like to complain, but people have really short memories I'm finding out. I don't mean to bash, but men, especially, are very literal. If you look fine, you are fine. If you act like you're dying, they figure you're still fine (only kidding!) they have to SEE it to believe it. I find it difficult to strike that balance between not being a complainer, but reminding people that I might not be feeling well. A catch 22 if I ever saw one! Very interesting question, I bet this personality trait (independent type) is very common among us!

08-22-2005, 06:27 PM

I can't wait to see how more people respond!!!

Yes, RL means real life...

OH!! And you know what I LOVE (hear the sarcasm dripping off that)???? I love when you inadvertently tell someone that you are worn out or whatever, and they say, "oh yeah, me too..." and start telling you how tired they are.... I'm sorry, but, I have NEVER experienced the kind of fatigue that I have over the past few months... I KNOW that their tired is COMPLETELY different... I just want to say "Shut up!! You have NO IDEA" sometimes.... But, I don't... I listen to their stories... as I ALWAYS do and give them my sympathy... blah blah blah blah...

08-23-2005, 07:37 AM
I started out being completely self reliant when I was first diagnosed. I think that may have been a bit of denial. But, I think it also had a lot to do with the fact that I was a mother, a wife, a student and an employee and I still had things to do. I still had to care for my children, take care of their home, earn a living and finish my education!
Prior to my diagnosis, I was a very healthy and athletic person and prided myself on my strength and endurance. Well, I thought that I was superwoman and could exercise my way out of being sick..ha ha ha ha ha.
I need not explain how that worked out!!
Like many of you, I got to the point where I could no longer do anything and then I had to ask for help! I was pleasantly surprised at the reaction from my children who, immediately, stepped in and helped as much as they could for their ages at the time.
Now that I have had Lupus for over 20 yrs, I have learned that I can only do what I can do and that it only hurts me when I try to do more. I am the only one who suffers (both physically and emotionally) from trying to do it all and trying to do too much. I became tired of causing my own problems when the illness was throwing enough problems at me. I needed to stop aggravating the situation and stop adding to my problems by refusing help and trying to do everything myself.
I am now adept at saying, "I can't do that", "I'm not going to do that" or "I'll do it if you help me, otherwise it's not going to get done!"
Surprisingly, I have been met with little to no objections and have found that, when I ask for help, it readily comes with no arguments!
People are surprisingly generous and understanding. I look for the good in everyone because I know that there is good in everyone!
Peace and Blessings

08-24-2005, 07:15 PM
Yup, I think one of the best parts about having lupus is that it caused me to be more real about my limitations and feel internally like I have an "excuse" to need help, say no, etc., which no one needs to have , of course!

Also, a big hearty "AMEN" to the thought about friends talking about how tired they are. I have a close friend I just will have to stop saying things like "had a hard time getting out of bed this morning" because she says, "Oh, yeah, me too" like she has the same situation. .......you all know how it is. Luckily, other people understand!

08-25-2005, 09:06 PM
yup, ive always always been like that. i hate asking for help. but lupus makes me. and i dont like it. its taken 6 years for me to actually start asking for help with it. but its a start. sigh. i still just want to take care of myself.......

09-17-2005, 08:47 PM
I'm glad to see other people who feel like I do...I thought I was the only one who was afraid to ask for help. I'm so obsessed with work that I'm afraid to get sick to jeopardize my job. I just started a new job right before I was diagnosed with lupus of the brain. Had I known it was serious enough to require chemotherapy, I may not have taken it.

I most recently started having severe problems with swelling in my legs and ankles. I know I need to get into the dr, but hate to jeopardize my job at all. I did make arrangements on 9/29 to take care of all my appts. Unfortunately I have about 5 different drs besides just my rheumatologist. I'm just hoping the swelling goes down, trying to watch salt, elevate my legs and go back to my low carb diet.

Let me know if anyone has any suggestions.

09-22-2005, 07:35 AM
Hey there!!!

I think I also have that problem, will go into my doc's rooms and when he asks how I am doing always say "fine thanks" if I was fine would not be there. :)

I do find it hard to explain and ask people for help, usually I just laugh it all off and say there are people far worse off then me, so I must just get on with it. My boyfriend also finds it hard to understand, he notices if I start limping for instance and generally asks is it the lupus but because I always just get on with it, I dont think he realises quite how bad it sometimes gets.