How can you talk to your family?

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firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 8/30/2007 6:47 PM (GMT -7)   
I need some help with this one.  I'm really not sure how to talk to my family about my health.  I have 1 sister who is pretty concerned and trys to understand what is going on with me.  She's offered me her kidney in case I need that someday and she has even offered to be a surrogate mother if the need for that arrises.  The rest of my family doesn't really get whats going on.  My parents are pretty passive about most things though.  That's just the way they've always been.  I have other siblings.  I wish they wouldn't ignore the things that are going on with me.  I know that I've always got friends to talk to, great friends!  But, I really would like my family to be the ones more involved.  Any suggestions? I just don't feel the support that I thought I would when I finally got diagnosed.  I have to say though that I'm glad I was diagnosed with something, because I got tired of my mother always suggesting I have something else.  She's pretty much never believed me when I've felt sick.  Also, I really wish my g-ma would quit telling me that depression causes Lupus.  I'm a firm believer, and I'm guessing most of you are too, that depression may be caused by a flare up, not the other way around.  Anyways, don't mean to drag this on, but I was hoping someone could give me some ideas.  Thanks!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 8/30/2007 7:58 PM (GMT -7)   
I'm not the best person to be the first to answer, as I have only a brother & a father, both of whom are single and live over 500 miles away, and they are not in touch with their own emotions enough to even have a clue as to what I might need -- I didn't even bother to tell them for almost 4 years.

I've learned to be very selective about who's words I really let effect me. or which words. If it isn't supportive, is redundant, or is basically useless, I sometimes manage to smile sweetly and say "you might be right" while thinking "you might be right but I know darn well you aren't and I'd just as soon burn you at the stake rather than listen to you about this one minute longer!!!!" And sometimes all I can do is turn away. All the explaining, etc in the world isn't going to change a lot of people.

Those who do manage to get relatives to understand seem to have had good results by giving people a copy of "the Spoon Theory" found at www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf.

I'm sure others will be along to share other useful tips soon. Sorry I'm not more help.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
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AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 8/30/2007 8:35 PM (GMT -7)   
Hi Firebabe,

Lynnwood gave you a link for "The Spoon Theory" . . . make sure to find time to read it. . . and maybe print it out. I was going to suggest the same thing.

I actually have 7 siblings. Only two of them EVER ask anything about my health. We are a very close and supportive family, but, for some reason, Lupus seems to be a taboo topic. I think it is because it is so difficult to explain and understand. For the most part, I just tell people that "my immune system attacks my healthy tissue" then I explain that for me it attacks my connective tissue and that I'm very fortunate that it has not attacked organs. This seems to be the easiest explanation.

That's why this forum is so therapeutic . . . we really do understand each other.

Blessings!
In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
Clickable Links:   Healing Well:  Lupus Resources
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dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 8/31/2007 5:52 AM (GMT -7)   
Given that both sides of my family know about Lupus and CTDs, I get support from them. The biggest challenge is my husband. He doesn't understand too much and I think he's afraid to learn. He read the spoon theory but I think he forgot about it already. I have always been one to "smile" through the pain so he won't see me as weak so I know its a lot of my fault. I think my pride gets in the way.
"Des"
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Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
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hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 8/31/2007 7:15 AM (GMT -7)   
firebabe, this is a tough one that a lot of us go through. The Spoon Theory is absolutely the best way to get family to understand what it is like to live with this illness. If they don't get it after reading the Spoon THeory, then they may not ever get it.

This subject came up at a good time. My sister-in-law (my hubby's sister) called last night and during the conversation she asked what I was doing with my days now that I'm not working and the kids are in school. My hubby, who was also on the phone chimed in and said that I was doing too much and not resting enough (he does get the whole lupus thing). My SIL's response to this was, "Well, it's probably good that you are up and doing things because if you just layed around all the time it probably wouldn't help things anyway". I really like my SIL, but I wanted to explode. I told her that some days I don't have a choice and that my body gets so worn down and my flares get so bad that I can barely get up and make it to the bathroom. I told her that I get so sick of this illness dictating my life that on days I can get up and do things that I end up doing a lot and probably end up doing too much. I still don't think she got it. I was thinking about sending to Spoon Theory to my hubby's family to hopefully help them understand why I sometimes can't do a whole lot wen we all get together. Fortunately my immediate family is pretty good about it.

This is such a hard thing to go through and it can make a big difference if you feel like you family supports you and understands. I hope you can find some way to help your family understand lupus better. ((((Hugs))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 8/31/2007 8:01 AM (GMT -7)   

Hi Firebabe, I'm sorry your family is not more understanding. I know it hurts when they don't believe you are worse ignore you. I think most of us have or are continuing to go through the same thing as you. The most recent thing my SIL said was Stop coming to the Lupus site and Pray more! Like Hippi said You can do both. Somtimes I feel like they have their own life and for me to be sick isn't in their plans. Sometimes I feel like I have to be the strong one because they can't handle it. However I'm getting ready to go on vacation and I talked to my mom on the phone the other day. She asked me if I was getting excited about it. I said yes but I'm a little afraid of getting sick before I go. She said Just try to relax and not get to stressed out about it. For my mom to even recognize that much was a real step forward. I really don't have anything to offer as far as how to deal with them. Everyone is different. I hope somone can give you some good advise. All I can say is you are not alone in your frustration. Hang in there.

hugs

carol


God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 8/31/2007 10:31 AM (GMT -7)   
I printed out the Spoon Theory this morning and read it over breakfast. I really like it. I also took it to work, and one of my biggest supporters there thought that was the coolest idea. I will share this with others when they try to ignore or talk me out of having Lupus. It's funny isn't it. I know one of you mentioned you feel as though you have to be the strong one. I feel that way a lot. I feel like I have to be brave and when the really clueless people are around, I really try to show no pain, so as to not trouble them. When it all comes down to it, I don't feel like I'm the same person anymore. I don't have the strength and energy to do things that my family has depended on me to do for years. I've always been there for them and it hurts that the favor is not being returned.

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/31/2007 5:38 PM (GMT -7)   
Firebabe, that's funny try to talk you out of having Lupus. That sure sounds about right though. Today I had to set my brother straight. He is a minister and thinks I should just pray harder. I said what do you want me to do just stop taking meds ? I said you know KR has cancer he's 13 years old. Are you saying he should just pray and not take chemo? Boy is it frustrating to have to fight to be understood by the people who you are supposed to be able to count on. I hope that your family eventually comes to terms with this and are more supportive.
hugs
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/1/2007 1:53 PM (GMT -7)   
Hi, Firebabe. I think we can all relate to your having problems trying to get people to understand what you deal with having lupus. Unfortunately, you will find that when people (even family) don't have their own serious health issues that trouble them on a regular basis, they do not seem to understand those who do. Even if you take the time to try to explain it, it just goes in one ear and out the other. If you do have someone in your life who understands, all I can say is cherish that person! You have to be strong for yourself! Nothing is put on you that you cannot bear. I know it seems like those are just words, but you would be truly amazed at just what you can bare when put to it. That is something you will have to work out for yourself and by trying some things you read on here have helped others manage is a great way to start! By sharing here, you can also draw strength from others. Just try not to get frustrated, we have to just take it one day at a time (if the day is too big, take it minute by minute--whatever works!) Just keep on keeping on! Best wishes!
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 9/2/2007 5:43 AM (GMT -7)   
I absolutely agree with Sharen. Sometimes people just don't u/stand no matter how hard u try to explain. My mom thinks it's because I eat wrong and did not get enough nutritions. I just don't bother to explain anymore.

sandspoker
Regular Member


Date Joined Apr 2007
Total Posts : 104
   Posted 9/3/2007 5:45 AM (GMT -7)   
Hi Firebabe... I totally understand where you are coming from - I'm sure most of us do actually....
Here's one for you - you can have your morning chuckle on this one... 
Both my sister and I have lupus.  My mother doesn't offer any understanding to my struggles but acknowledges and goes on and on about my sister's - now does that make any sense to anyone???   I just can't figure that one out!  My brother told me that one night, he tried to talk to my mom about my health (We were there visiting her about a month ago and I overdid it one day and I couldn't get out of bed the next morning) he said she would  keep changing the subject to my sister!!  It leaves me "scratching my head" so to speak.
 
I say to heck with all the non-believers... lol
Be strong and stay positive :)
 
Sands...
 

phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 9/4/2007 7:15 PM (GMT -7)   
Good for you sand...I guess I can feel your disbelief. I have been dealing with this for WHAT about 3-4 years now. My wife and I are trying very hard to move to a new home and I have been working 70 hrs aweek. My Dad came over to help one saturday to help. I was so tried and worn out and told him....the reply I got....hold on to your hat. "I BLEAM YOUR MOM" How can you bleam mom for my health issues? He thinks that because I didn't play football or any sports that my mom made me weak....HA!!!! At 47 now and 26 years of mariage, 3 children, 2 grandchildren and a great job...I am sorry I think I got off track....The will never know how we feel and I pray when they do we will be there for them with loving arms wide open...
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES, REQUIP RESTLESS LEG SYNDROME, LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/5/2007 7:49 AM (GMT -7)   
Oh Frank . . . I do think this is even a bigger issue for men. . . . being understood. How on earth are you working 70 hours a week???? But a great job does help. Always enjoy your posts!!

Blessings!
In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
Clickable Links:   Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
Criterea for Diagnosing Lupus:  Lupus Criterea 
Find a Lupus Foundation Chapter near you: Lupus Chapter Locator


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 9/12/2007 4:23 AM (GMT -7)   
Boy, can I relate to this post.
My parents and two sisters are supportive, but they just don't get it. They tell me "This is all just your nerves". My family would be there for me if I need them, but when I need to talk, they just hum and haw and are annoyed by me. I've stopped telling them anything. I live alone so it's tough for me on so many occasions. I never ask them to take me to dr's appoint or tests. I go alone. I never ask them to help me with doing errands or housework, I do it alone.
They think I'm some super power-house that can handle this, but truth be told, I'm falling apart.
I'm not sure how much longer I can work full time since I seem to be getting worse.
I also just got tests back showing Lyme activity. And now my GP thinks I may have a bleed in my gut. Overwhelmed to say the least, but again, no one is coming forward to help.
As for my boyfriend, well I think that may be over. He tries but doesn't get it. He has no idea how to support me. When I'm having a rough day, he takes it personally and lashes out. That is added stress I don't need.
Ahhhhhh good times :-(

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/12/2007 5:08 AM (GMT -7)   
Hi Peacesoul . . . sorry you are having such trouble . . . Lyme's too??? That's too much!! I hope that gut issue is dealt with quickly . . . I wonder if it's from meds or from the Lupus??

I'm sorry about your bf . . . sounds like a blessing if he cleared the path for a friend or bf who could encourage you better.

Have you explained how the immune system attacks your healthy cells??? That seems to make sense to people. It also explains the varied symptoms and the pain showing up in odd places.

I hope you'll keep us posted about the gut and the Lyme's activity.

Blessings!
In His Grip!,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator ~ Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's, Inflamatory Bowel, Inflammatory Arthritis
Clickable Links:   Healing Well:  Lupus Resources ~~ Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org  ~~  Criterea for Diagnosing Lupus (4 of 11):  Lupus Criterea  ~~   Lupus Foundation Chapter near you  Lupus Chapter Locator


melissa2k12
Regular Member


Date Joined Aug 2007
Total Posts : 39
   Posted 9/12/2007 6:15 AM (GMT -7)   
Hi everyone. I'm sorry that some of you have these issues to deal with your families. On top of feeling sick, it's worse to have to deal with all of that. I have a lot of issues with my parents (but then who doesn't?) but they are very understanding and active when it comes to lupus. I was going through a rough time with them and then I got this flare. They just put everything aside and are now focusing on getting me better. The sad thing is, when I get better, it'll be back to issues again.

What I tend to do when people ask me how I am, I water down what's going on. I'll explain all the science-y parts of lupus in detail, but when it comes to how I'm actually feeling, I'll smile and say that I'm ok when I'm actually not. I don't know, I think a part of it is that I don't want people to feel sorry for me or give me that pity filled look. I really don't like that.

Hope everyone is well...
Diagnosed SLE 2002, Raynaud's and Hives 2004, Lupus Nephritis 2007
cellcept, prednisone, plaquenil, zrytec, cozaar, nexium, furosemide, oscal + d


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/12/2007 8:05 AM (GMT -7)   
Firebabe, this is such a hard issue for all of us, especially since it's hard to have a healthy relationship with people who don't believe us or who don't take the time to understand us. After having been sick for two or three years I don't bring anything up anymore. When I'm asked how I'm feeling I answer honestly and tell them I'm having a great day and feeling better or I'm having a bit of a rough time right now, but things will improve. I'm very conscious of never complaining or of acting as though I'm looking for attention. But I don't make apologies when I'm not up to doing anything. This is my life and I deal with it the best I can. If someone doesn't understand, that's their problem. My mother had lupus and I believe that has helped. She was a sweet and generous woman who never complained about anything and everyone knew that she was sick. I believe that has helped my family understand that I'm not making this up. There are also some pharmacists in the family - my stepson, my son's fiance, and my dad was also a pharmacist, and they know the strong meds I take.

I believe one of the best ways to handle people who are skeptical is to not become defensive or try to go into too much detail. The spoon theory is a great way of explaining lupus but you'll still find skeptics out there. I loved what Lynwood said and agree with her that some people aren't going to change no matter how much explaining we do.

I hope you can find peace with the people in your family. I know I'm especially grateful for my HW family who always believes and supports me.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 9/12/2007 8:12 AM (GMT -7)   
Agree so much. It is so hard for a healthy person to understand us at all. They think that we are exaggerating. My mom thinks that I did not eat write, and my H said I did not exercise. They dun even take time to u/stand at all. It is especially hurtful when someone close to u did not show any sympthay at all. I really dun know how to make them u/stand. I just learn to live w/it and learn to be independent (LOL).

melissa2k12
Regular Member


Date Joined Aug 2007
Total Posts : 39
   Posted 9/12/2007 3:28 PM (GMT -7)   
I was actually talking to my boyfriend about this (I showed him the spoon theory story as well), and he said that he doesn't understand why healthy people have a hard time understanding people who aren't so healthy. He's usually in top shape (black belt, healthy eater) and he said once while training he sprained both thumbs. He said that it was horrible, he couldn't do anything and that made him wonder how someone with arthritis would function. Whenever he's not in top shape, he gets annoyed that his body isn't doing the things that he's used to doing. So, he says, despite being a model of health, he can perfectly understand a sick lupie like me. I thought it was a good example to have someone relate to how you feel. Maybe you guys could use it too.

Take care
Diagnosed SLE 2002, Raynaud's and Hives 2004, Lupus Nephritis 2007
cellcept, prednisone, plaquenil, zrytec, cozaar, nexium, furosemide, oscal + d


phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 9/12/2007 5:52 PM (GMT -7)   
nice job melissa, that the frist step. It is Great when your loved one understands.

Best to both of you.
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES, REQUIP RESTLESS LEG SYNDROME, LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/12/2007 8:40 PM (GMT -7)   
Hi, Firebabe. Getting people to understand us is SO difficult. My BF probably understands the most about it (but he too has a lot of health problems). My mom at least seems to try, but I still don't think she really gets it. My dad called me this afternoon and woke me up from a nap that I needed really bad. I did several errands today and that heat just took me out (I probably should have split it up over 2 days instead of trying to do it all at once, Duh!). Anyway, when I answered the phone, he said "Are you in the bed again?". I just said, "Yes, and I really need the rest from all the running I did today." I must have made the point because he didn't drag out the conversation like he usually does; he just said he'd talk to me later. I could tell from his initial response though that he still doesn't get it. I have tried to explain this stuff. I've given out leaflets explaining it until I'm sick of it. All I know is, I understand it! I wish you luck with trying to get your family to understand so they can help you out. I just know you have a job on your hands! Good luck,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/12/2007 8:50 PM (GMT -7)   
Hi Sharen . . . when I desperately need a nap, I turn the ringer off on the phone in the room I'm sleeping in. That way, the phone doesn't wake me and I can just check my messages when I wake. It also means I don't have to explain why I'm sleeping. I'd love to see these people wake 10x each night for a few nights and see how they feel.

Blessings!
In His Grip!,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator ~ Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's, Inflamatory Bowel, Inflammatory Arthritis
Clickable Links:   Healing Well:  Lupus Resources ~~ Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org  ~~  Criterea for Diagnosing Lupus (4 of 11):  Lupus Criterea  ~~   Lupus Foundation Chapter near you  Lupus Chapter Locator


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/12/2007 9:09 PM (GMT -7)   
Thanks, Rosie. That's a great idea! Duh!!! This disease makes you so crazy worrying with all its' crap all the time, I think it makes your common sense go hide somewhere! You know, I'll have to look at my phone in the bedroom, I've never even actually turned a phone off! Does that make me seem like I have even LESS common sense? I'm going to look at it right now so I won't forget! Thanks so much,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

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