View Full Version : Psychology of Lupus and 'dealing with it'

09-12-2011, 07:47 AM
DEFINITELY HAVING A WWWWAAAAAAAA WHY ME MOMENT. Just reading around the forum on another night of yet not being able to sleep and I'm not going to go do anything stupid or anything but it really feels like what's the point. Knowing we now have to have a limited life. That our potential before this disease is different now to then. One moment. Dnt think it's that bad at all and that I will be fine, get on with life and it's all good but then I realize it is serious and does affect us and we have no choice. I can't describe it but you all know the feeling I'm sure. It's just kinda like what's the point? But I am kn anti depressants and without wanting t call it depression because my family have all had it and I'm scared knowing how deep they got it but I'm guessing it's the depression talking that right now I can't see past the why me and what's the point where as before I could, I can't think of what my answers where before I have become 'sad' but you kind of didn't really have the questions then suppose you just got on with it. Are you guys that have had Lupus for awhile ok with it now, does everything actually feel fine. Like I know you always have this in your life but does everything become ok? Thanks s much pps! Xxx

09-12-2011, 08:37 AM
Hi Yolanda,

Welcome to WHL. I felt much the same way you do when I got my SLE diagnosis. It's a shock, it's scary, and it can be terribly depressing at first. It will take time to accept the situation, and there will be changes you'll have to deal with as time goes on.

However, things will get better. I was diagnosed in 2004, and I'm doing fine. I have my bad days, but I also have some really good days too. You mentioned that our potential is different now, and you are right. But, different doesn't have to be a bad thing. I had to stop doing some things that I loved to do, but I've found new activities, hobbies, and interests that are just as challenging and satisfying. In many ways, my life since the diagnosis is better than it was before.

I've lived with SLE for 8 years, and my mother has lived with SLE for 23 years. She's 74 and still going strong.

Have hope,


09-12-2011, 08:56 AM
For now I'll just reply, I think Lupus forces us to look after our bodies which is a good thing, I should snooze now and will chat a lot tomorrow. Thanks! You are very helpful!

09-12-2011, 09:19 AM
For now I'll just reply, I think Lupus forces us to look after our bodies which is a good thing, I should snooze now and will chat a lot tomorrow. Thanks! You are very helpful!

The longer you live with Lupus, the smaller the "monster" gets. It just takes time. It scared the heck out of me at first, but now, rather than being a monster, it's more like an annoying uninvited guest that shows up a couple of times a week. With most people, if they get on a good plan of proper meds, and make some lifestyle changes like staying out of the sun, they can keep it controlled much of the time.

If you're having bad day, or bad night, there's usually someone here to talk to. If things become scary or overwhelming, talking to others who understand what it's like to live with Lupus can really help. No need to suffer in silence.


PS-We have a bunch of members here from Australia, and I think quite of few of them live in, or near Perth.

09-12-2011, 10:23 AM
I don't think that there is anyone here that has not been where you are. When we first get diagnosed we can only focus on loss. we seem to only be able to what we won't be able to do anymore. It is very hard to look at. Rob is correct though, over time we find other things that fulfill us. Yes we may be on a different path now but it doesn't mean it is a bad one. IT is just a life for of possibilities that we never knew we had.

The depression part is something that I want to discuss. We must remember that Lupus affects all of our body, brain included. Although there is more then enough reasons to be depressed just dealing with this disease you also need to know that often times there is actually a physical reason that we have the depression. There is no shame in taking anti-depressants even if it is only as you first try to handle this disease. No one says that it has to be forever but for me, and for many of us, they really helped at first.

Life is isn't over. It is simply offering you new surprises!