View Full Version : Has this happened to you?

08-07-2006, 06:29 AM
I need to vent about something, that maybe you all can sympathize with and give me some pointers about how to handle...Since I was diagnosed with SLE and Raynaud's in June of this year, after almost two years of being sick, I have begun to tell people that I have Lupus. I have gotten a few people who know others who have Lupus. I have even had a couple people who have said, "I know someone who has that, it's not so bad. You should feel lucky it's not something worse." I don't feel very lucky.

Anyway, it turns out that my husband's cousin Mandy, who is 23, has had Lupus since she was about 14 or 15. She apparently has a milder form of it. My in-laws keep saying that they don't understand how I could be so sick when Mandy doesn't seem to have any problems. (I am almost 34). Well, because I have had so much time off work over the last two years, we have spent all of our savings and run up a large amount of debt just trying to survive (my husband is active duty Navy and we have two children). We recently asked for a loan from his parents to help us get by and pay off some debt that was way past due and his father (who is of the mind that if you can't see it or touch it, it doesn't exist) basically said "No, we won't loan you money, your wife needs to get off her lazy a#@ and go to work and stop staying home sick. Mandy does just fine and doesn't play sick all the time. If you need money, she needs to get a second job".

I am so frustrated, I don't know what to do. I know there is probably nothing I can do. I just feel like such a burden and that no matter what I say or do, it is not going to be good enough.

Thanks for listening

08-07-2006, 07:42 AM
Peach I am so sorry that you are having to experience that. There are never 2 people alike in their battle with lupus. And just to let you know just because your husband's cousin has been doing rather well doesn't mean she will not have problems in the future. I know that first hand. I was well for almost 9 full years and then mine flared up to where I now work part time. I don't know if I can ever work full time again. I am only 27. I was in the worst pain I had ever experienced and thanks to all the medications I've been on I'm now 90% pain free. But that can change at any time. Your in-laws just do not seem to understand and I hope you will not let it get to you. Be strong and you will be in my prayers. I will also pray for your in-laws to show understanding and care/compassion for the struggles you are going through.
~Butterfly :wink:

08-07-2006, 08:04 AM
I guess I am just super frustrated right now because I am overwhelmed at work and working a lot of hours and I feel out of control of my own body and my life at the same time. I was so sick with flu-like symptoms and back and chest pains on Thursday and Friday that I didn't go to work. Saturday I went to the grocery store and walked around Home Depot with my husband and was so exhausted and in so much pain, that I had to walk with a cane Saturday evening. Then yesterday, I helped him paint some trim in my daughter's bedroom, and it put in me in so much pain in my back and shoulders that last night I had to take Vicodin which promptly made me sick. So, I am at my wit's end and extremely snappy with my poor hubby. I just sometimes feel like I should go away and leave everyone alone and they would be better off.

You are an awesome part of this bulletin board. Thanks for being a good listener and poster.

08-07-2006, 09:30 AM
It's hard for people who have never been sick to understand what it's like to have an "invisible" illness. When people tell me that lupus isn't so bad, I want to scream. Sometimes I'm patient and explain that lupus can range in severity from very mild to fatal, and the more organs you have involved, the more serious the disease can become. Sometimes I'm mean and point out that my first cousin and two close friends I met in the hospital all died from lupus complications - all in their thirties or younger. The fact that your husbands's cousin has a mild form just means that she's lucky. Have you tried talking to her? If she understands anything about the disease, maybe she can explain to your family just how serious it can be.

08-07-2006, 09:38 AM

Sorry that you are dealing with this... I'm going to tell you something that my mother tells me ALL THE TIME, and I am POSITIVE it's true...

You could make up a disease and people will say they know someone who has it!

Also, just because someone SEEMS to be doing okay, doesn't mean they really are... I always get the "But, I thought you were doing better!?!?" comment... Your husband sees you every day... Does he see his cousin everyday? Do his parents see his cousin everyday? I doubt even his aunt and uncle REALLY see her every day...

Hang in there! Give them all some literature! Educate them! Maybe then they will understand a little more...

Send them to www.butyoudontlooksick.com and have them read the spoon theory...

Good Luck!!!

08-07-2006, 10:44 AM
Thank you all for the words of encouragement. I am putting together a notebook right now of information about Lupus, particularly the symptoms that I experience, and the medications that I take and their various side effects. I am also starting a daily journal in that notebook; just a little thing that says my "ouchies" for the day and my mood. I think I will let those people look at that notebook.

Thanks for the link also...I will check it out. I am so grateful I found this message board! :P

08-07-2006, 12:10 PM
Peach, I'm very sorry you're dealing with such close-minded people in your own family. We all have some people like that around us, but the "closer" they are to us, the more we feel they should make an effort to understand. But that is NOT necessarily the case, as you've discovered.

First, in practical terms, would your husband have any more sway with his father to explain the true diversity of the illness? What about your m-i-law or Mandy? Think I suggested something similar to this in a post about one of your coworkers, and then you said your boss intervened on your behalf. That's often the best way with people who can be 'educated.' Don't hesitate to ask people to be on your 'team,' that's what it's all about. Also don't be afraid to tell your fil point blank that if he doesn't want to loan you money he shouldn't -- but you are very hurt and disrespected that he would say something like this. If he's decent, he'll hear you out and if not, well you'll know he's not so decent and your relationship with him is very limited by his own ignorance.

On the more philosophical front, one of the 'gifts' (disguised as a pain in the a$$) of this illness is, it teaches you to be very tough, more than you thought possible. At least, that's what it's done for me. Since I've been sick I've lost 1. half my long-time friends 2. my sister and 3. all my former coworkers within days of being 'laid off' and 4. a boyfriend I thought was a good guy but who finally revealed he thought I had a 'scam' going (though that's no loss at all it sure felt like it at the time). What's left are a handful of true friends, some old some new. This is after 40-some years on the planet. It hurt me plenty. But I've realized that they were ALL pretty much afraid of something. My coworkers, being drawn into a legal battle. One of my long-time friends gradually disappeared, probably b/c he's afraid of facing his own mortality. A couple of friends I'd only know a year or two were just inconvenienced b/c I couldn't stay out as late or drive as far. My sister is terrified of... well, everything lol!

It still hurts at times to think of the people I've lost, but it makes it a bit easier when I think of how primal and deep their fear must be that they ran from me when we got to this bump in the road together. In fairness to them, I have to be honest with myself and say, who knows if I would have been any kinder? Like to think I would've but maybe not... it's the kind of thing you don't know until you're tested. I know I tried to push the reality of the illness away from myself because of my own fear -- only thing is, I had no choice!

You can be proud of the fact that you are facing this head-on. That requires and builds courage. I love that you have a husband who loves you, and a boss who has stood with you through the sick time. Go ahead and let yourself mourn the things you've lost, but don't forget all you've gained... so far!

08-07-2006, 12:37 PM
My husband is active duty Army and I have two small children as well. I understand how hard it is to get by on a military salary. He just enlisted a year and a half ago, and I was diagnosed with SLE a few months ago. It's so hard to have this disease because to most people, we "look normal". People say to my husband all the time, "she looks fine." Sometimes I WISH I had some disfiguring ailment so people would be more understanding (well, maybe not really, but you know what I mean!). It's especially hard with my husband's work because his unit gets sent off to training for weeks at a time. We are in the process of getting a compassionate reassignment to be closer to family so I can have support if I need it. Please hang in there. Maybe your husband needs to be the one to sit HIS family down and explain the seriousness of the situation. At least it sounds like he's on your side, and that's really the important thing! I really hope and pray your family will come around. In the meantime, feel better knowing you have friends here that know you aren't being a "wimp" or a "baby" or making things up!

08-07-2006, 05:00 PM
My cousin has had Lupus since she was 16 and when I was diagnosed with lupus 2 and 1/2 years ago several family members told me she's doing great you will be fine to. When I had a flare up for a long time they would always compare me to my cousin and say that doesn't happen to her or she's not as sick as you seem to be. I finally told them that this is a disease that doesn't do the same thing to everyone. My cousin has only had one bad flare that I know about and is in remission. For along time I thought "what am I doing wrong, why am I sick. What am I not doing that my cousin is doing to prevent her lupus from flaring up ??". I began to think I was doing this to myself. Then reality hit you are doing your best to stay well.
Take care of yourself and find some good reading material for your family to read, maybe this would bring a better understanding.

08-07-2006, 05:33 PM
I heard that comment many times... "Stop being a hypochondriac!" or "Why are you in bed all day?" But you don't look sick. :? Well, I guess that's the only thing good about lupus is that you always look good on the outside, but people don't know that you're sick on the inside.

When I have my flares, the only signs or symptoms others see is maybe my butterfly rash across my cheeks and nose. It sometimes gets pinker when I'm out in the sun too long. Thank goodness for makeup! :) I also get small marks on my arms as well, also from the sun. But that's the only thing. But on the inside, I feel bodyaches, fatigue, joint pains, migraines, swollen fingers, hot hands and feet, etc. :cry: I cry on the inside all the time, but, I try to mask my pain with a smile, and put up a front. I talk about how I feel to my coworkers, but, deep down inside, I know they don't really understand. :roll:

Its so much easier talking to people who have lupus, who feel how I feel, who understands me... who believes me... That's why I'm so blessed to find this forum. I'm so happy to make new friends. :BIG:

Welcome to our family, PEACH224. Hope to hear from you real soon. :wink:

08-07-2006, 05:51 PM
I am sorry to here about your in-laws. Have you asked you husband to talk to them? Maybe they will listen to him or print them off some information on lupus. Maybe then they will back off of you. :mad: People like that really make me mad, when they have no idea the pain that you are feeling inside, and the hurt you are feeling because they are saying these things to you. Just know that we are all here for you. Take care of your self. :)

08-07-2006, 06:17 PM
I can understand your frustration. I have extended family members who (in my opinion) trivialize this illness, constantly saying that I'll be fine and I look good and don't understand how sick I really have been. My husband (and my adult kids too), bless his heart, tells them they just don't get it and defends me all the time. He's been wonderfully understanding since my diagnosis in June.

Everyone we talk to knows someone with Lupus and their story is always different from mine. Lots of people give the impression if so and so is functioning just fine with Lupus then I should too. It's annoying but you know ...stick with the family and friends who understand and look out for you ....never mind the others ...even if one of the others is your father-in-law. Hang in there!!

PS. My son is a Marine and I don't know how military families ever make ends meet. What we pay them is shameful! Please thank your husband for serving and thank you for supporting his efforts.

08-07-2006, 06:42 PM

08-08-2006, 05:16 AM
Thank you all very much for making me feel better. When I read all of these posts, I was just so thankful to know that I am not crazy and not alone in what I am experiencing. The last few weeks have been such a struggle. It is nice to know that I have found friends who understand and who have been where I am and are going through the same things that I am. I will definitely be using the advice you have all given me!

And SoleSinger, thank you so much for the link, that website is wonderful. I am going to tell everyone the Spoon Theory. It is a wonderful metaphor for my life. I cried when I read it because it was such a perfect description of my situation. Thank you!

I hope everyone has a great week. I know mine will be better now. Thanks again to all of you.