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Lupus isnt such a big deal

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Posted 2/1/2008 3:32 AM (GMT 0)
I am newer to the Lupus diagnosis as of August 07. I have recently found myself in a position of needing to reveal what I have. It has cost me some hospital time and in need of help caring for my 4 kids in a couple of those situations. I have in the last 2 weeks bumped into 4 people who have asked me what exactly my diagnosis is and the prompt reply is a smile and the comment, " Oh! I have a friend with that and its not such a big deal, it is a disease of remissions so you wont be sick often". I havent been well since July and not to mention I was diagnosed with 3 nasty auto immune disease virtually at the same time. While I hope for remission I am not in one now and I find that people suck!!!!!
Posted 2/1/2008 3:50 AM (GMT 0)
Welcome to the world of chronic and "invisible" disease. I am so sorry you have to go through this, Chaya! Unfortunately most people have no idea what they are talking about and this will be a constant battle for you. Especially with people who do not get sick often, they are the worst. You might also find out that some family members have a hard time understanding. It really is counter-productive to try to explain much to most of these idiots so do your best not to fall into that trap. It is not worth the waste of your energy.

I am sorry if I sound so negative, but I am dealing with this big time right now and I am rather bitter about how insensitive many of these people can be. The best approach is to smile and say, "Wow, that's great, I'll call you when I feel better." Then, do not ever call them again!

I will keep you in my prayers!
Posted 2/1/2008 3:54 AM (GMT 0)
Chaya,

 

Yes.  People suck.  They have no clue about lupus at all.  There's a lot of ignorance about this disease.  It would be GREAT if a remission came so easily like they say it does.  What a load of hoo-ha...  It takes work to get into a remisson.  A lot of work and sometimes just some good luck.  I was in remission for 4 years.  It was great.  But I still wasn't the "old" me with all the energy, skinny body, etc, etc, etc.  The remission left as quickly as it arrived. 

 

I think what we realistically have to hope for is at least a disease that is relatively quiet and not doing too much to piss us off...  That's all I'm asking for!  A little break would be really nice!

 

So ya, people are idiots when they think they know what lupus is like.  You have to have lupus to know.  Not have a friend who has lupus.  I'm ranting with ya!

 

Ginny

Posted 2/1/2008 5:06 AM (GMT 0)
Sorry Chays . . . I "had" a good friend who said similar things. "My aunt has lupus and its no big deal . . . she doesn't even take ANY meds! You could do more if you wanted, you are just scared" . . . WHAT??? Ya right, that's why I work myself into a flare so frequently! If anything we all do TO MUCH! Sorry . . . I'm ranting with you . . . I like Audrey's suggestion!! Blessings!
Posted 2/1/2008 5:16 AM (GMT 0)
Hi Chaya,

   I'm also sorry your going through this right now. I agree, when someone doesn't experience this disease they have no idea what they're talking about. It makes me so mad when people say things like that!! I get even madder when someone says oh yeah, I know what that is, its and awful disease. Then they turn around and say, something like lets go to the lake or beach and get some sun....Grrrr!! If they would only read one article or book to educate themselves before saying dumb things!

   Hang in there and try not to let people like that get to you. Take care and keep us updated.

                                                              Babs

Posted 2/1/2008 2:35 PM (GMT 0)
Chaya, I think so many of us can relate to this and it really stinks!!  Luckily I have two really good friends who do understand and my immediate family is supportive.  I have one sister in law who I love, but she just doesn't get it at all.  She asked me once what I do with myself during the day now that I don't work.  I told her that I have some new hobbies like scrapbooking, etc and she said that it's probably better for me to be up and around and doing things instead of laying around all day doing nothing.  I tried to explain that there are some days that my body won't let me do anything and I have no choice but to rest.  I can tell she's one of those people who thinks that if you just do this or that then you will feel better. I have had some time periods that I felt pretty good and was hoping I was going into remission.  I am learning, like ginny said, that remission doesn't mean that we are completely better - we are still more tired than most people and still have to really take precautions and try to balance activiy with rest. It's sad that there isn't more public knowledge about lupus so that people would know what a struggle ut is to try to just do normal things everyday.  If someone hasn't told you about the Spoon Theory yet, it's worth checking it out.  It's written by a woman who has lupus and it's a great way to explain to healthy people what it is like to live with lupus everyday.  I printed out copies and gave them to some of my family and to my good friends.  Here's the website: http://www.butyoudontlooksick.com   Then just click on the Spoon Theory. One great thing about this forum is being able to come here and be among people who truly do understand all the everday struggles of living with lupus.  It would be much harder to cope with this illness if I didn't have my HealingWell family. Take care and know we are always here for you.
Posted 2/1/2008 3:09 PM (GMT 0)
Sometimes I get so frustrated!

I want to say, "I have a lupus. There is no cure and I am allergic to most of the meds that are used to try and manage the disease. So I am in constant pain and usually in a foul mood! Eventually, the disease will win and I'll die"

What I actually do is smile and nod my agreement to whatever moron is currently telling me "OH, that's a shame. I hope you are over it, soon."

Very recently I have been watching my son start down this road and it breaks my heart.

People can be such idiots. But, the fact that they have no idea what any of this is - is a good thing for them! I wish none of us knew about these diseases - maybe some day!!
Posted 2/1/2008 4:50 PM (GMT 0)
People don't know about lupus or other auto immune diseases and don't really care.  I know that I did not really know what auto immune disease can do until I got sick 3 years ago.  I have mctd and had an extreme case which almost killed me....over 3 months in hospitals and it left me a quadriplegic who could not swallow.

Now I am functional and leading a normal life again but I am not cured and I am not the same as before.  I also have the cloud hanging over me that, as we all do, that the disease could come back.  My case was very unique...came on like crazy and once the doctors figured out an effective treatment I have not had a relapse.  Despite that the damage to my body (lost 40lbs of muscle mass and multilple organ involvement) makes it impossible for me to return to "normal".

People who had not seen me for a while just say I look great, a little thinner, but can't believe what I went through.  Most probably think it an exaggeration and some I direct to a link that has my personal story as told by the rehab hospital. 

Indifference and ignorance of lupus is the rule.  I guess you get accustomed to it but it still hurts.  Those people who are younger and have less serious problems that come and go, and have job and family responsibilities face a tough, uphill battle against indifference and ignorance have a particularly tough time with it.  I am a senior and retired and don't really have to explain or make excuses for things.

Today I look normal and healthy but I struggle to get up every morning, my back muscles are still a total mess and sometimes spasm, I am no where near as strong as before despite over 2 years of therapy and working out, and my stamina is lacking.  That alone would be a big deal for most healthy people.  Oh, I forgot to mention multiple problems with my GI tract that resulted from my diseases.

Try to educate those around you and ignore the rest.

Nothing is easy about lupus or other AI diseases.

Bill

Posted 2/5/2008 5:29 PM (GMT 0)
So Sorry Chaya -- and hugs all around. It's too bad that with all the pain and fatigue we suffer from that we have to suffer from other's insensitivity too. I had a friend, who I thought understood what I was going through, only to have her call and complain bitterly about having to take care of her husband who was laid up for 2 weeks after surgery. I have been mostly homebound for two years. My husband has cared for me like a saint. He does "everything" -- which my friend complained so vehemently of. Of all the people she could have called and complained to, couldn't she have picked someone without a chronic illness???? I felt so crushed and misunderstood. It wouldn't have been so bad if she wasn't such a good friend. I've been away from the board for awhile, and realized I needed to come back to a place that was safe and where I was understood. I'm so glad we are all here for each other. Thank you everyone!

Posted 2/5/2008 6:13 PM (GMT 0)
Hello Harmony . . . clad to see you post again!! Sorry you are so limited from this dd. I'm thrilled to hear that your husband is so involved. What a blessing! I hope you'll be posting often!! Blessings!
Posted 2/5/2008 9:52 PM (GMT 0)
Chaya, most of us do understand. I am currently in a lupus remission- but look at the other problems listed in my signature and know NONE of those is behaving. I am also pregnant which means I am stuck in bed 99% of the time because we want to make sure the baby isn't born too soon. My own mother still, to this day, sends me crackpot "cures" for my disease even after seeing it almost kill me and knowing it killed her grandma and one of her aunts. Yep, people suck. I lost most of my friends because I can't do things other people can. Any tiny bit of stress and suddenly I am in a major flare. Sad. I wish that I could say people will learn. The fact is most don't. My husband takes wonderful care of me and is so careful with me, but he was there first hand to witness just how bad it can get. My family never spent much time with me. My grandma watched her mother and sister deteriorate and so she understands. My oldest daughter knows I am sick and accepts it. My youngest tells everyone I am lying and not really sick. How nice to have a 10 year old decide I am well and making all this up.
Posted 2/8/2008 3:56 AM (GMT 0)
Wow... frustrating topic, huh?

At first, I tried explaining everything... You just get this glazed over look from people and eventually you figure out it isn't worth the time or energy.

I've found I can't really talk about it much with my husband. I think it is a denial thing. We are supposed to meet with a couple -the wife has lupus and the husband seems very well informed. Hoping he can work on my husband a little. It isn't that he is mean or anything...it's just sort of like - if he doesn't acknowledge it - it isn't real.

My husband and I have been involved in a couples bible study with the same group for 10 years...so we have a lot of history. Those are the people who "get it". And, it is kind of weird...the wives in the group...they each have their own "role". Amy: She checks in on me a lot...how are you feeling, etc. And genuinely cares. Bonnie is very quiet - she struggles with not really knowing what to say, but will often say to me: "so - how are you and prednisone getting along". I know she prays for me all the time. Jan is the one that I can absolutely go off on a tangent with. She is a great listener and asks lots of questions. The guys in the group even do a pretty good job of dealing with it. Greg is really ornery and we have always picked on each other mercilessly. He still picks on me...and I appreciate that. He knows, tho, when things are bad and just lets me know he is thinking about me. With Rod....I know when I look like death warmed over. He will put his arm around me and say: I'm worried about you Kimmy. Jim...he just make sure he hugs me when he sees me.

So - I think the bottom line is that you have to figure out who can be in your inner circle. Those are the people that are worth investing your energy in. Forget the rest.

~Kim
Posted 2/8/2008 12:35 PM (GMT 0)

Chaya I am sorry you have to deal with jerks. Most people don't have a clue what we go through in a day and lots don't care to know. I have family members who think I am faking. I was in a car accident five years ago and was injured quite badly. I ended up with a condition called RSD which is as bad as Lupus is and it has left my leg bent and out of shape. I walk with a big lip, only slowly getting better with the help of a wonderful foot doctor, and still these family members tell people I am faking. Then they tell me that if I am faking I am the one that has to live with that on my conscience. Well I say to heck with these people, if they don't know me better then that by now then I don't need them in my life bringing me down when I am trying so desperatly hard to get up.

Keep your head up Chaya, don't let them beat you down, they will try really hard to do that. Be a bigger person even though it takes a lot of energy to be the bigger person sometime. ((((CHAYA))))

Connie

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