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Discussion Starter #1
Do you think about your lupus every day? If so, how much time do you spend thinking, talking or researching about it? After two years I find I still think about it a lot and still do occasional research. I'm wondering at what point it would be considered an unhealthy amount of thinking. Granted, it's hard not to think about it when there's pain involved, but I wonder if I should just be giving it a quick thought and then moving on.

I'd be interested in hearing about what percentage of the time you think about your health problems. It may help me to know if I'm out of the norm or not. Thanks!
 

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Hi there,

I don't know if I can help you know if you're in the norm or not. I think the answer to that is, on the one hand "far too much" and on the other "not at all". Although I am obliged to think of it for the moment - heels, pain, not being able to walk, tiredness, aching and so on. I really don't identify myself through that at all and spend a lot of time thinking more constructively about what I now should find the time to do and get on with SO....

new resolution - no more health, plenty of new things to do!!!

Oh, and I never ever think I'm about to catch the flu or people's bugs and am totally unobsessed about mad hygiene and stuff like that.

My only problem with the resolution might be, I think about other people's health a lot :lol:

Katharine
 

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Discussion Starter #3
Well Katherine, you sound well balanced to me.

One thing I will say, I have cut back on visiting the several support forums I usually frequent. That helps me get away from thinking about it a little at least. But then I feel like I need to check in at least periodically to see how everyone is doing, lend some support or ask a question. I how many people who are well controlled find themselves going a whole day without thinking about it?
 

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I go through periods of time where I don't think about it at all for several days or longer (when I'm healthy); and then I have times where I do think I spend an unhealthy amount of time thinking about my health problems and pain and lupus in general and being a bit scared for the future. I only had the scared for the future part *after* I had my daughter as you do tend to think more about wanting to be there for a child no matter what. Before having her I fully believed that my husband and family could handle anything so I didn't worry about the future so much.

The vast majority of the time thoguh, while I may talk to myself about having a lupus pain... or "that's the lupus doing that", it's just a statement of fact and not a worrying torment sort of thing. I think the key thing to think about when answering this question is if the thoughts are doing any sort of harm to you or your interpersonal relationships with others. Do they interfere with real life? Is there a high level of anxiety when you think about it so that it makes life quite a bit harder?

For me, for actual numbers... I'd say it's less than 5 minutes a day for me thinking about my lupus and how it is affecting me on most days... and I have stopped researching lupus type questions for myself. For my work on the boards though, I do still Google things as they come up. When I was really ill and downright scared, it would occupy at least an hour of my day or more.
 

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The Other Illinois Tammy
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Jesse,
I am not sure there is a norm. I don't know how you can not think about the lupus as it involves everything you do, want to, and can't do. It is only me but I would think that it is unhealthy not to think about it, as that would mean you have not excepted that you have it and it's limits on you. If I am going outside I have to think what the uv rays are, if I will be in the sun, if it will be too warm or too cold, everything I do has an effect on my lupus and my body so to be healthy I have to constantly be thinking of how it will effect the lupus. Somethings come more natural than others like the sun, but I can't tell if uv rays are high by looking outside. That is just what I think is all.

As for search for more information about lupus, I feel the more you know and understand it the better you are to handle it. It is your right to find out what new things are out there for lupus. To make your life easier or to stop pain or to know not to do just because it does not work. My mom use to tell me a smart person is willing to learn what they need to know, were the smartest people will never be done learning. I think whatever time you spend thinking about or researching your lupus is, nor will it ever be unhealthy for you or anyone else that has done it. I hope this helps you a little to see that it is good to think about it and to research and learn about what you have.
 

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Hi Jesse,

For me, and I will echo what Maia said, on days when I feel good then I really do not think about my health woes.

On days when I dont feel well then I tend to think more about what is happening to my body.

I Google alot, research to educate as I feel Knowledge is Power. It has helped me better prepare myself when I am at doctors appointments so I can speak to them and understand what they are saying when they speak to me.

If you feel like you are obsessing about your illness then maybe a new hobbie or craft of sorts. Possibly volunteer outside your home or get involved in something to occupie more of your time.

I wish you well moving forward and don't beat yourself up over this. What you may see as unhealthy or obsessing others may see as normal.:wink2:
 

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Discussion Starter #9
Thank you all. You've brought up some good points. I agree that a key point is, is all that thinking causing anxiety or depression? I hadn't considered that part of it and I'm glad to say...no. And I suppose continued research is good as long as it doesn't occupy too much time.

I do volunteer work one morning a week and that's all I can handle right now, but I can see the value in staying busy. I guess my concern is that if I think about it too much, I'll somehow make my health worse by focusing on it rather than on other things. Sort of like talking myself into being sicker than I am. I don't think I'm at that point now and I want to make sure I don't get there.

Thanks for your thoughts on this.

P.S. Hang in there Douglas.
 

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I think that 'Whatever we think' is related to what is happening at that time.

All the rest is anxiety:hehe:

A chronic illness will keep testing your resolve, but I hate the thought of it defining me.

Nicky
 

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I try not to think about it at all... it really depresses me. But I DO think about being sick just about every day (and excessively every day) when I'm really sick/flaring.
 

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Hi Jesse,

You do have a point. People with high anxiety levels might be doing themselves more harm than good by researching all the time. In one way that is where this forum is beneficial. Members can post their concerns, they can be discussed and evaluated lessening their anxiety.

My doctor says medical students are notorious for thinking they might have some of the diseases they are studying when they first start out. Fortunately they either get past that phase of hypochondria or they drop out.

Take care,
Lazylegs
 

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lazylegs, i heard that about the medical students in the show "the doctors".

by the way does anybody watch that show its very informative and educational, but sometimes it can scare the out of me.

i echo your words Douglas. i think about lupus all the time and i mean 24 0 7.

i know its not normal or even healthy. i never did this until i started to get symptoms. i do want to stop but i dont know how.
 

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florie
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Interesting question. It made me think. Well i would have to say that i don't dwell on myself. I worry to much about others. But I can say that when I really don't feel well I think about it and worry and start looking up stuff on the computer, and post on the site here. Sometimes things that happen to me suddenly makes me scared and i think of the worst.

Hope this has made sense.
florie
 

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Discussion Starter #15
Well, your responses make me feel like I'm pretty much the norm. I don't know why that's so important to me, but it is. Depending on the day I'll think more or less, but if there's a new symptom all bets are off and I'm at the computer and obsessing for a while. I guess this is not too wacky.

It's so true that forums like this help to lessen anxiety. I was thinking that maybe spending time on here is part of being too involved in the disease, but there's so much to be gained here that I think this is a healthy part of acknowledging and thinking about the disease process.
 

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When I was awaiting diagnosis and newly diagnosed I spent quite a bit of time online. I believe it is important to learn about the disease, so long as you are using reliable sources. I have many good friends I have met through Lupus.

These days I tend to "take the tablets and get on with it" rather more but I think that is due to increased knowledge.

Lupus friends are very important though and I am still very grateful to be able to come here.
x Lola
 

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I think forums like this help a lot. I come here for information and trust what comes back to me more then what I find if I Google. You will find a lot of horror stories when you Google instead of getting info from real people who share the same disease and concerns with you.

Compassion also is something you get with a forum that Google cant give you. I find that my anxiety is quickly relieved when I visit here, post a question and then get replies from a great group of very knowledgeable folks.

I have decided some of my best friends are people I have never met!!!:wink2:
 

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Pollianna
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I used to worry all the time 24/7 but that was mainly because I know I had an illness that they couldn't find. In the end this and my new medical degree from the University of Google led me to ask my doctor to look for Hashimotos Thyroiditis :lol: You should have seen his face :eek:

Then I finally diagnosed myself with lupus, asked him to look for it and he couldn't find it :lol: Now I have a diagnosis I'm sure he won't be able to look at me when he sees me, bless him

I think it doesn't matter how much we obsess as long as we learn to reign in the emotional effect reading so much can have on us. My rule of thumb is when you feel scared stop reading :p
 
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