Had it for a while-but having a hard time

makinthebestofit

Hi, my name is Kimberly and I was diagnosed in '03 after 4 years of complaining and searching. I have a husband that wants to "fix" it and 2 boys ages 4 and 6. I thought I was doing okay in the coping department untill recently. I am soooooo sick of feeling rotten all the time and taking meds that just take the edge off. I'm sorry to start off complaining, but I want my life back!!!!!!!!!! I guess the biggest thing is what I hear when I mention to anyone that I am not feeling great--"but you don't look sick." How does anyone handle this? Does anyone else feel just so alone in trying to live a full life that is also full of fatigue and pain? Again, sorry to be so negative, but that is how I have been feeling, and I can't seem to get out of it. Thanks for listening to me vent...
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Kimberly

AngelaS · Posted: Wed May 03, 2006 4:22 pm Post subject:

Hi, Kimberly. My name is Angela and I know exactly what you are feeling. I was diagnosed with Lupus only 3 months ago, and I am already tired of being sick. I guess the most frustrating thing is that you take all this medicine and still feel horrible. My rheumatologist just added two more today, like I don't already take enough stuff.

I also get tired of the "but you don't look sick", unfortunately it is my husband who tells me this. I just wanted you to know that you are not alone, and don't apologize for being negative. When you hurt all the time it has a tendency to do that to you. Also, thank you for posting your topic. It helps me to know that there are other people out there that feel just like me. Hang in there and you are in my prayers.
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Angela Sears

Saysusie · Posted: Thu May 04, 2006 12:56 am Post subject:

Hi Kimberly and Angela Laughing

I am glad that both of you are here. Especially because I want you both to know that you are not alone. Almost every one of us have had to dealt with the "But You Don't Look Sick" insensitivity!! Not looking sick is sometimes the only positive thing about this disease. I generally reply by saying, "This is an internal disease and my organs are being destroyed. I'm sorry that you can't see it, but believe me...I can feel it!!"
That may be an overstatement for many of us, but it generally works.
We all can understand and empathize with your frustration. You will never hear that phrase here because we all understand the fatigue, the pain and the malaise!! You are not alone

Peace and BLessings
Saysusie

TracyDawn · Posted: Thu May 04, 2006 12:05 pm Post subject:

I am so sorry. Complain all you want here, if you can't do it here then where can you? I gave everyone who mattered to me, my family, inlaws, work, all of them information to read on Lupus. So they could better try to understand that while they can't see it, I feel like crap. NONE of them question me anymore when I say I am having a bad day. They can now look at my face and see it, I don't even have to say it anymore and when I do happen to have to explain all I tell them is it's a bad lupus day. End of discussion. If I think they need a better one, I might go into more detail. But if I think it's none of their business then I don't bother explaining. Some people are just nosy and want something to say. Ignore them. Yesterday I was at my son's soccer game and had my umbrella over me. THe other moms said wow that's a great idea. I said well I have lupus so you'll see it every game if I can't get into the shade. End of discussion. They said well it's still a great idea and started giving me other ideas of how to cover up. So I really think it depends on WHO is doing the talking too. you might just find a friend and the person asking MIGHT actually care about your answer. But if you don't feel like talking then come up with a generalized answer and use it every time you need to. Wink

I am so sorry you are feeling so crappy right now. Same here. I need to go do labs and urine tests right now actually to see if I have an infection. So I really hope we both feel better soon. {{HUG}}