Ignoring Lupus

[lupusgirl]

[COLOR=red]Hi all i have bee dx now for three years..And still my family seem to give me no support. :( My husband is great he is my rock to lean on..When me or my partner talk about my illnes, my parent's talk over us and change the subject, i feel like i'm about to explode :hissy: Sometimes it would be nice if they asked if i'm feeling ok, or even gave me a hug!! The day's would feel much better if they just recognised what iam going through. I don't want to sound selfish, I don't want everything to be about me,but a little support goes a long way. Thanks for listening i will hear from you all soon.. :D

[Lourie]

I know it can be tough sometimes and believe me weve all been there. My family also has issues with discussing the disease because they don't know how to deal with it or how to help me get better. It's as if they are in denial. I understand this is a tough disease and there is so much of the unknown involved but we really do need support. Have you tried sitting down and talking with them about your feelings? Sounds like they have already irritated you so what could it hurt. Maybe they will understand and what there doing isn't intentional and they have no idea how they are making you feel. From my own personal experience which I hate to admit! Alot of my feelings that I get from the family are made much worse in my head because I already don't feel good and feel they are just insensitive. (most of the time they are) I do make it much worse though. I hope you feel better soon and get all the support you need.
Take care,
Lourie

[jenawri]

I can relate to what you are going through. My parents have always been in denial about Lupus. THey seem to have a philosophy that if we continue to not discuss it, it will eventually go away. I was diagnosed at age 17 and you can imagine how hard it was for me to cope at that time, when my parents wouldn't even discuss it with me.
Hang in there and concentrate on the people in your life who ARE supportive. I have learned to accept the fact that my parents are just really scared of Lupus and I mostly just discuss it with my husband, my sister, and my friends. Take care!
Jennifer

[bugsy]

Hiya Irene

Great big :hugbetter: :hugbetter: :hugbetter: to you hun, i feel for you because at times i know how much i want a hug off my dad and i would really miss that.

I am glad that you come to chat and let us support you when needed.

Take care of yourself love and hugs XX JO XX

[rwb200]

What is it with parents ? My wifes are the same way.
I think maybe it is just to hard for them to admit and hadle the fact that there little girl has problems so they try to ignore it and avoid it.
Maybe they are afraid they would break down in front of us and don't want to do that.
Not sure but it would be so much easier if they just talked to us and showed some sign of acknowledment other then " You are sure a grouch today"

Not sure why this is but it seems to me and my wife that they hear me better then they do her.
She can tell them something and it is like it goes in one ear and out the other or it hits a stone wall and never even gets in.
I can say the same thing and they hear it.
Part of it may be that I do not get frustrated and give up on it. I will interupt every time I'm interupted or will ignore what they say as much as they are me and will keep repeating it. I do not get upset and yell because that just puts defences up and you are sure to hit a wall. But I do manage to get out what I want and I get a recognition of it or they hear it 100 times.
When they start a new subject I like to listen and then say hey but and then hit right back where I was headed before.
They try and jump off the road but I toss them right back on it as soon as I can.

I have found My Mom understands or trys to alot more then they do and if the two familys are together for some reason she will do the same thing I'm doing and then will pass it off to me.
Seems it is harder to ignore stereo then it is one as long as my wife is not the stereo. Maybe they just have to many years practice of tuning her out.

[peonyprincess]

:wave: Totally understand where you are at! My husband and his parents are wonderful when I am having a flare, or just in general. They always ask how I am doing and sometimes it gets a little frustrating because I am not ALWAYS sick. My kids try and understand but for them it is hard beacsue they are so young. They just know sometimes mom is up to going and doing things and other days I need to sleep. They are getting better with it every day. My dad calls daily to check in to see how things are going in general, we dont see each other much as he drives truck cross country. My mom on the other hand, I am not sure about. There are times she is totally committed to h elping me out, usually when she has an audience and then there are other times that she just blows me off completely. I guess since I am married and all I am no longer her problem. God forbid, I have a horrible flare and might need extra help and it interrupts her golf game!!!!!!!! Example being...this week, I have been in bed for most of the week with a horrible flare. My dad has called two-three times a day checking on me wanting to know what he can do, mind you he is sick with a chest cold and is out somewhere between Kentucky and Texas. My mom is 1 hour away and hasn't called to check. When I called to tell her I was down she wanted to rant and rave about the weather, my brother, the neighbors, didnt matter as long a we didnt discuss the "L" word. I agree it is not all about me, but dang, sometimes some support or a sounding board would be nice!!!!!!!!

[pokey13]

Hi,

This I can totally relate to, My family is incredable, I have been dx Lupus and ITP for 20 years, and have had to miss many a family event because of flares or symptoms , weddings, funerals, baby showers you name it, do they think I bow out of these events because I just dont want to be there ? I have had good times and bad times, its not all bad, But still 20 years later, I just spent 5 days in the hospital 2 of those in ICU, and my Mom says to me "are they really sure its Lupus"

I think people have a hard time with what a cronic illness is all about

its on going
its every day
its forever

So why when I say I feel like c*#p do they act surprised?
I felt like c*#p yesterday too.

They will never get it.
Sorry I just had to vent

~Angela

[Deborah Rumbles]

Hi it is really difficult enough going through daily life as a lupus sufferer, without having to explain everday to someone what is wrong with you,I have told my family and friends so many times that I'm now bored,so what is it they don't get ? I have a disease that is with me everyday for the rest of my life,easy enough you would think, but you know what it isn't and thats because it isn't actually happening to them, so they will never experience the extreme tiredness and pain we feel, tiredness to some is just tiredness but to us it is exhaustion,I now have send them all a letter and hope that this works,as I really feel that they don't want to know,thank god for my husband he is totally amazing and excellent at explaining what SLE is and how ot effects me,my 2 sons are also good at telling people it always there,especially when people say "oh good you look so well today" :tantrum: WHATS THAT ABOUT!!Deborah

[HelenS]

hi, how frustrating this must be for you. some people in our lives dont even try to understand - they dont get it and they probably never will. i dont bring up lupus in a conversation unless i am specifically asked a question about it. if asked how i am i say "better thanks", or "not that great" and leave it at that. i am fortunate in that my hubby, drs and friends understand and are supportive, family is another matter especially my in laws. i hold my head high knowing that i have chosen to face this disease with dignity and that i am doing all i can for my health.

luv helenxxx

[sparks]

:wave: Hi :love: :love: :love:
i know the feeling i havent had any support off my family for 18 years
but my husband ray makes up for it :lol:











( they allways seem to be worse off ) :rolleyes:


linda and ray

[Vida]

:wave:

i don't have lupus but primary billiary cirrohsis an autoimmune diesease that attacks the liver and the symptoms are similar to lupus. my sister is also ill and the only one to understand or ask how i am.

my mother just seems to ignore that i am ill and then wonders why i don't tell her about hospital appointments.

my in laws are not that understanding either especially my sister in law who when they visit for a week can't understand why i am not able to start the day before around midday - if the weathr is as hot as it is at the moment when they visit next month she will not see me get my day started at all - at least not to go out in the full sunshine i just can not stand the heat from the sun. ironically my father in law has now been diagnosed with a liver complaint - i just hope they are a bit more understanding towards him.

[fame5429]

Lupusgirl - I know what you are going through. I haven't officially been dx but every doctor I see says - LUPUS, LUPUS, LUPUS, I get results Monday 8/1/05. My husband is usually very understanding when I have what he calls an episode and have to stay in bed all day (at least one day on the weekend). BUT my mom doesn't want to talk about it much, I think she is afraid I will blame her because her mother's sister had LUPUS. When I don't feel well enough to go anywhere she doesn't understand. When I don't want people just to pop over without calling she always says - I'm your mother I should be able to come over anytime - BUT sometimes I am so exhausted that my house gets a mess (which drives me crazy) and working full time doesn't leave me more than the weekends to get it cleaned up. I have always been a clean freak BUT now I just can't do it. My in laws just keep asking my husband when I'm going to get well. They don't understand that it will probably only get worse. Hang in there.

[3forme]

Hmmmmm,
Dad is a doc, a good doc. Baby sis works in cancer research....at Harvard. They just can't deal with it. They don't say I don't have it, BUT they just can't DEAL. My mother(book-keeper) and husband(contractor) and older sister the department of defense chick, can deal. Most of my friends get the up and down-ness of it. I am SO fortunate that my rector's wife is an RN and our assistant rector is an RN, they are SUPER.
Go figure, people are weird, all of us. AND you can't teach a pig to sing, so vent away all you can and then try to forgive them for being so DENSE.
take care, 3forme

[blestby3]

My family was relieved when I was diagnosed 10 years ago, but they still struggle with it from time to time. Mostly because I am able to function like most people, so they forget until I break out in an ugly rash or some other lovely "gift".

I think they do not want to talk about it bcause they can't fix it for you and they feel helpless in this situation. Perhaphs they think if they do not dwell on it it will go away! I hope they will come around.

Till then take care of yourself!

Tonya

[annamunguia]

[COLOR=red] I sincerely relate to your message. :( My family-mother and sisters) seem to block out anything that pertains to health issues. It's always about me, me, me (meaning them), this really offends me because I've always been there financial support and other issues. This shouldn't really surprise me because during the holidays, my birthday etc...I'm forgotten and cannot for the life of me understand why. Not even a telephone call at least. Bothers me most is feeling like I'm alone (no family to comfort me). Although, I'm married (7 yrs) 3 children/adults 25, 20, 15 and 2 kittens, 2 dogs I'm still not or should I say not feeling the love and concern. I can be in severe pain and drawn forward to my. knees because of the pains my husband don't come to my rescue. My son lives on his own Pearland, Tx. Sometimes I guess I'm looking for more than I should when I shouldn't. Not certain, but confuse. I've been dx since 2000' dr.'s believe I more than likely had lupus when I was 10 years old or younger. Now, I'm 44 yrs of age (June) and I also have a number of health problems; blood clot disorder, pancres inflamation, seizures, memory loss, weight gain, RA Rheumatoid Arth., By Polar Disorder, sleep apnea, small tumor brain. On top of this all I was paraylized and no memory at all in the year of 2002'. Fortunately God was watching over me. Doctors told my family I was going into a coma. I prayed to God in my mind/heart to help me. Didn't know how to speak - I would see my family standing at my bed side and my son Rudy said something I'll never forget Mom, I've been praying and I know you are strong and your going to walk, speak out of this hospital. My son gave me the strength to fight out what was keeping me trapped. Doctors said lupus attacked my brain and paralized me all over. I'm up and out of the hospital thanks to God first and my son Rudy who gave me encouraging words. Still til this day my husband doesn't seem to be concerned of how I'm feeling or ask me ????? It's quite difficult but sometimes we are searching for that security, comfort and rescue out of this. Wish you luck and I'll pray for you to. Email if you would like to talk at anmjoe1129@yahoo.com

[coco05]

Ill give you my story, maybe it will help. I may have posted this before, now sure....that "lupy thang".

First visit to pc, dr ran test and told me look like RA. Set up a rheumy apt for 5 weeks later. I got very depressed and spent lots of time searching on the net for answers. When I tried to talk to my husband and sisters.....I just got these blank looks and a quick change of subject. I was in quite abit of pain and mostly layed around or limped around the house, couldnt lift ANYTHING, and couldnt open my hands alot of the time. Very obvious I was sick, but somehow easy for them to ignore.

My turning point happened at a beauty shop appointment. She was telling me this new hair do she wanted to give me, explaining just a few curls in the top, blah blah blah......and I completely fell apart. I started crying so hard I couldnt stop to tell her anything. Finally I told her I may have RA and could no longer lift my arms up to do my hair, just cut it all off short!!

By the time I got home, I knew I had to find some support to keep from just losing it no matter where I was. I couldnt keep fighting the tears. When my hubby got home, we sat down and I remember telling him "I need some support, I cant carry this all by myself. I have questions and concerns about my future that I need to voice and talk about. You are the one who needs to listen to me. Just listen. I dont expect you to have any answers, (thats the key statement), I know there is nothing you can do. But I have to get it out. Please just listen and let me rant and rave when I need to. Its my way of getting rid of the stress which is exactly what I dont need." I called both my sisters and gave them the same speech.

Boy what a turnaround in them..they call and check on me, my hubby and I take time to talk almost everyday about whatever. And I dont have to pay to get my hair cut just to vent! ; )

Turns out so far my dx is unspecified connective tissue disease.. leaning toward lupus instead of RA.

I hope this helps someone out there. I think people just dont know what to say when you talk about a chronic disease. I think it is important to let them know you are not expecting any answers or fixes, just a understand ear.

Bless you all

[northstandgirlie]

:angry: Isn't it sad?

I've read all the posts on this thread and sadly we all seem to suffer the same problem. Why is it that we can't get support from those closest to us?

I'm not saying we all want to be the centre of attention but occasionally, just occasionally, you feel like you want to get off the merry-go-round for a little while and let it go past. Wait for the next ride when you've got the strength and a pain-free window.

And the people you want to appreciate that are your family and close friends.

My husband has problems with his joints (especially his elbows and knees), so I often have to keep quiet about how I'm feeling just because someone has got to do the chores, the dinner. But the one thing that does make me mad, is when I do say I'm in pain, all I get is, "Well I'm in pain too." Hardly puts me in a position just to stop because I'm bone tired and can't move for discomfort! :hissy:

At least we know that coming on here people can empathise!

Keep your chins up. Don't let their insensitivity get you down.

Rita xx

[raggedyann1]

Rita,

I think you have made an over generalization that is not necessarily true.
Many many members here have trouble with family support, I do not doubt that fact. I have 1 family member who is a real problem. But I have a loving husband and a mother who comes up to help us 2 times a month. She is 74 but fairly healthy.

Those of us with good loving support are less likely to post on a post like this. Partly because we know that we all need to vent at times and not everyone is as blessed.

Remember that the membership here is NOT a cross section of lupus patients. More often we are the ones having a hard time getting a diagnosis, or have multiple auto-immune diseases or the sickest end of lupus. So we are far more limited than the sisters co-worker who has a relative with lupus and they still work all the time.

I hope things improve for you soon and that your husband can become more supportive.

Take care,
Karen

[BJE]

Unfortunately, others try to make everything about themselves. They are selfish and do not really want to know what our problems are. That would involve effort and actually thinking of someone other than themselves. For me, it's easier just to stay away from them unless absolutely necessary. We all feel better for it.

[macfamily53]

Dear LupisGirl

I know this ia little late at posting this but hope you get it. I know we do all understand what you are going through but also as any one else with lupus would agree we need to vent or we will explode on ou rfamily and that would probably do no good but we would feel better not them. I am having knee surgery on monday the 15th of august and i come from a family of 8. I have 6 sisters and one brother. I did have two but lost him to cancer unfortuanatel. Well anyway I have had one of my sisters offer to help afterwards and she ahs two teenagers and a 22 year old an d a grand baby living with her. Of coures she is the one to offer the support. She :hugbetter: :hugbetter: takes care of the grandbaby all day and goes to work at night. The rest of the family has not even said nothing except one said good luck monday. Well that was awfull nice of her. Well anyway like a lot of them said concentrate on the ones that are there for you. It is hard though soemtimes I know. My husband and kids have been great with helping me around the house when they can but unfortuantely my husband works a lot because i do not and thre kids are working also and going to college. They are 20 and 18 and busy but are here for me especially my 20 year old daughter. Sometimes I think I should not talk to her for fear i might scare her. Well anyway i guess i just want to let you know that you have all kinds of support in here in the chat room and if you ever want an e_mAIl address i would glady give you mine to talk a little more. Take care. :love: :flowers:

Tammy