Unwanted Advice, or just trying to help?

I called my Brother in Law to wish him a happy birthday -

he's an April Fool's Baby : p

He asked how I was healing since the last time I saw him I wasn't walking yet after my surgery. I told him, I'm walking around - limited and getting stronger. I told him the docs say it could be taking longer because of my lupus, but they're not sure. He starts to tell me about a friend of his who has lupus and owns two companies and works at both of them etc....

After I hung up, I thought about it and it irritated me. Then I thought about some of the members we have here, who manage to work, and go to school and take care of families. I can focus on the negative and get upset, or I can focus on the positive.... So I can't work full time standing 8 hours on my feet anymore, but I might be able to work full time at a desk job doing something else?

Yesterday I went back to the University Career Development Center, and got help with my resume : ) I've re-written it, and I can drop in any time in the morning Monday through Friday to have a critique on my changes. April 11 is a Job Fair, and I can pick which employers I want to meet. I can set realistic goals to meet with just a few - some temp companies all in one place maybe? I can use the time I have now to do these things, that I couldn't do while I was working. I haven't interviewed in 4 years..... I can do some practice interviews at the University - all I have to do is ask : )

I think he was just trying to help or make you feel better that things could improve. He just has to remember that every person is different. I'm glad you're keeping your goals realistic and learning to work with lupus to keep yourself healthy. That's the best we can do.

Hi... I guess it was a way of saying that you need to be stronger and fight all the symptoms that u are going through. Most of us cannot work during a flare, but after we have to carry on with our lifes, even if is with little pain somewhere.

Hope u feel better, and carry on setting ur goals, which in my case gives me more strenght.

I loved your post. I thought it was a very courageous act by you to first recognize that you were reacting to your brother's comment and it was initially negative but you did turn it into a positive for yourself. So many persons react to those of us with Lupus and their comments are well meaning but pretty clueless to what a person with Lupus really has to go through.

I commend you for turning what could have been a lemon into lemonade, because ultimately what matters is what you think of yourself and your own path in this life. Keep strong and remember: what others think of you is none of your business. It is theirs/

Great way to handle your brother-in-laws implication that if his friend can still be superman, there’s no excuse for you not to be superwoman. I bet you didn’t think to ask which lupus his friend has- discoid or SLE? He probably has “discoid” lupus. When my work suffered because of my lupus my boss was “kind” enough to point out to me how his friend has lupus, too and it doesn’t slow him down or affect his ability to work. I asked him which lupus his friend had and he looked at me blankly and said he didn’t know there were different kinds of lupus. I told him yes there were different kinds of lupus (drug-induced, discoid and systemic) with systemic lupus being the most severe. I asked him if his friend took medication for his lupus and he said yes that he uses some prescription cream on his skin and that’s all. Discoid lupus. Case closed. Trisha, I’m glad you’re trying to find a way to work despite lupus, but don’t kick yourself if you’re not able to handle it. At least you can say, “I tried.” I also think about getting back out there and working, but my eyes are wide open now and I’m realistic about my limitations. At my last job the fluorescent lighting really bothered me as well as natural daylight because my desk was by our big front windows, I was on my feet most of the day which made my arthritis act up and I’d hurt from the waist down making it hard to walk or get up from a sitting position. We used chemicals at work daily, which isn’t good for the immune system and gave me headaches and I believe contributed to my brain fog. Add normal everyday work stress to the mix and it’s no wonder I ended up quitting. I do feel much better, but not 100%. With lupus you never feel 100% anyway. I recently bought Microsoft Office hoping to learn and be able to get an “office” job/receptionist. Computer monitors do bother me, too. They give me a fever, headache and achiness. That flu feeling, but what am I to do? I say just do it (to myself). If things work out great, if not then don’t beat yourself up about it. There is a difference between giving up and of knowing when your body has had enough.

I remember doing the same thing to my mom. As she aged, I compared her to others her age who were a lot more active than she was. As I read your post, I thought about why I did that to my mom. It was because I was scared - I didn't want her to get old and leave me..and more activity would have quieted those fears. Now I'm in her position and get the same crap from my children around the lupus. It's hard to not feel bad when I get those comments, but I also think about the why and it helps a bit.

You are doing so many positive things for yourself. Congratulations! You go, girl!!


oh, how I wish I could work an 8 hour day, I take care of my grandchildren 1, 2, 3 and 5 as needed and it does me in for days.....It drives me mentally cazy that i'm not able to do like I did 10 years ago or even 4 years ago and i'm only 53.

So glad to hear your story. We might be weak physically than normal people but lupus cannot stop us think big and make great achievements in our life. Wish you good luck with job hunting!

I don’t know, my sister in law asked me how things were going, only half listened to my response, then gave me the what I think is everyone here’s most aggravating statement of “well you look good”. She also proceeded to tell me she knows someone who had it who is a waitress. This entire conversation made me so angry that I didn’t have much else to say the rest of the day. I think one of the worst things we can do is compare ourselves. Just because one person has lupus and works doesn’t mean everyone can. Lupus presents itself so differently sometimes it’s mind boggling. As we all know there are some who are in the very beginning stages with fatigue and mild joint pain then there are others who have many overlapping diseases along with debilitating joint pain and fatigue along with a whole list of other symptoms. Point is you can always find someone in much worse shape than yourself or someone in much better shape than you. Just do what is right and best for you.
You know the old static sound t.v.'s used to make when stations went off air for the night and you used to sort of zone out and tune it out…well that’s what I do now when people start spewing nonsense to me, all I hear is static and I ignore it!! ( I know I am aging myself with that comparison :wink: ).
Anyways don’t be too hard on yourself!!!