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karli1238
12-20-2008, 11:07 AM
I am so upset with my mom right now. She just came over and asked me if I was going to xmas party tomorrow. I said it depends on how I feel. I have a hard time planning things right now. She just went off about how I just need to get out of the house and do things. I started crying and told her she needs to learn about lupus. I can't just wish it away. Its not that simple. She said we should go for walks and that I should let light in my house. How do I go walking when I'm in pain? I told her that the light gives me rashes. She didn't want to believe. She was like will look at the people who have no arms or legs it could be worse. So I used the saying I read on this website that if I had cancer she would treat me differently. How have all of u dealt with people who don't want to understand?

iseedeadmonkeys
12-20-2008, 11:39 AM
You know it really upsets me to be reading things like this, but the reason is because my dad treats me the same and doesnt like to come to terms with my lupus, they think they are doing the right thing for their daughters when because of the lack of understanding they say and do all the wrong things, like you say the only thing you can do is keep pushing this website under her nose until hopefully she will listen, i wish you well Karli and i hope some day in time your mom listens to you, its hard i know its hard and it takes time too best wishes xx

hatlady
12-20-2008, 12:43 PM
I've found that telling a story sometimes help educate them - there's a great website with a story called "the spoon theory" I've used that several times, and now, with my coworkers and my family I can say "Oh I'm low on spoons today" and they all know what I mean.

www.butyoudontlooksick.com

It it written by a young woman with lupus - and how she deals with her day to day at college.

Many hugs to you - we all understand!

rob
12-20-2008, 12:58 PM
Hi Karli,

Your problems with people not understanding this disease is one of the most common problems Lupus patients have to deal with. It can also be one of the most difficult things to overcome. Could you take your Mom with you to your next appointment and have your Dr/rheumo talk to her face to face? Many times, hearing it from a Dr. makes people realize how serious this disease is. Or you could get her a book about lupus to read, or even have her come here and read the stories from people in this forum.

The Dr. trick worked on my father, who could not accept my situation. Now, here's the ironic part of this situation. Stress, and sunlight, are two sure fire ways to trigger a flare. She stressed you to the point of tears, and she could very well be the cause of your next flare. And, unless you want to wear sunscreen indoors all day, you can't let a whole lot of light in. Also, going for a walk when you know you cannot do it just adds to the bad mix. Those three very important and basic points are what I would concentrate on when trying to explain this to your Mom.

There will also be some people who will never understand, or accept your situation. If it's a casual friend, or some co-worker, there's not much of an emotional impact involved in cutting people like that out of your life. Many times they just stop calling or coming around anyway. If the person who refuses to understand is a family member, best friend, fiancee or girlfriend/boyfriend, then it can be a terribly heartbreaking situation. My fiancee who I dated for five years left me not long after my diagnosis, only a month before we were to get married. She could not accept my illness.

The bottom line is this-

Lupus is a very REAL disease. There is no cure. It can be fatal. But in many, many cases, it can be managed and kept under control. We have many members here who have lived with Lupus for 40 years, even more. But to keep it under control one needs to avoid stress whenever possible, avoid sunlight always, and you must pace yourself and not over-exert yourself. Karli, you should be direct, and matter of fact. Print this paragraph about the bottom line, and let your mother read it. Or if she's willing, do like I suggested and have her come here and read some of our stories. I hope you get this resolved ASAP. I know it's a terrible thing to have to deal with. Come here to talk, vent, cry, or just hang out. We'll listen. Please let us know how this goes, and know that you can come here and recieve unconditional acceptance, and understanding.

Rob

rob
12-20-2008, 01:04 PM
Thanks Hatlady, I knew I was forgetting something. I'm a bit fogged up today. The "but you don't look sick" website is top notch, and the spoon theory is an excellent tool for helping people to understand this disease.

Angel Oliver
12-20-2008, 01:11 PM
Hi Karli,

As i said in the other post, this year has been my worst ever. I was so exhausted, so sick i had to stop working in NOvember 2007. I have heard nothing from my so called friends, they really think im a nutter, a hypacondriact who has a different illness every day. I told one of my friends something personal about my illness, she laughed in my face and has distanced herself from me big time. They had the works christmas party last week and never invited me.I cried so much, i would'nt have even gone...i just wanted an invite...to know they know im alive.
My own Mam tells me on a daily basis, i need to get out, get back to work and that will make me feel better. (Even though i have Insomnia and some nights dont sleep at all). She'll make me go to the shops and get light things for her.In her mind she is helping by getting me out of the house, but believe me, i feel so ill some days it is NOT a help.
I have lost all my so called friends, people who i totally trusted.I realise now, things happen for a reason, so i am glad i got rid of the rubbish in my life.Any friends i make now i AM ill, i will know are the true friends. My best friend was an alcaholic.She used to call me drunk in work.I didnt mind cause i wanted her to know she was'nt alone.She is now off the alcahol.The sad thing is, now i am sick, she texted me and said 2 depressed people are a bad combination. I dont hear from her anymore.
Always remember, it's not in your mind, you are sick.Just because you can not see it changes nothing, except sometimes your faith in humans. We all know what you are going through.Together we will get through this.You keep strong! I understand!!!

Love
Angel.xxxxx

DrinkofWtr
12-21-2008, 06:33 PM
I've given up trying to get people to understand Lupus. It takes too much time and energy that I don't have anymore.

rob
12-21-2008, 07:48 PM
I've given up trying to get people to understand Lupus. It takes too much time and energy that I don't have anymore.

That's sad, but very true. Too bad it has to be that way. People who doubt or question me on this subject, at this point, are totally ignored. People with no medical expertise whatsoever seem to think they can diagnose us, and then treat us. Five minutes later, they are off talking to someone else about some other unrelated subject. Solving the problems of the world. They don't want to know, and they don't care. I no longer care about them either. And so it goes.

karli1238
12-21-2008, 09:02 PM
Thanks for all the replies. I really like the spoon theory. I have tried to get family members to read it but most of them won't take the time. I am realizing that I will need to distance myself from family and friends that aren't willing to accept my illness. I can't do everything like I used to and the people I keep in my life will need to understand that.

rob
12-21-2008, 09:13 PM
Hey there Karli,

I hope my last post didn't discourage you. Sometimes I dwell upon the negative too much. I should have also mentioned all the people who are understanding and very helpful in my life now, rather than what I was missing back then. My family has really been a lifeline for me. It wasn't always that way, so I appreciate them even more. Sometimes I guess hate and anger are hard to leave behind though.

Rob

karli1238
12-21-2008, 09:24 PM
No not discouraging at all. I'm tired of letting myself get hurt by people so I figure it will be easier if I only have people who are really there for me. Just let the other people be acquaintances. My grandpa always said you were a lucky person if you had 5 good friends when you died. I think that's true. Anyways no worries, I didn't take any of it a bad way. Still new at trying to get my feelings across in posts.

juno
01-09-2009, 04:25 AM
Hey,

Reading this post has made me so sad. Its difficult believe anyone's family and friends could be anything but supportive. My friend has lupus and I know there is no way I will ever fully understand what he is going through but I just hope that I can be there for him when he needs me and be strong enough to give him space whenthats what he needs. I would hate to think of him not having anyone to support him.

So thank you to everyone in this forum who provides such kind words and support. And Karli, keep strong and I hope that with time your family will come to accept what you are going through

KathyW1958
01-09-2009, 06:24 AM
Hi Karli,
I feel sad for you that your mother acts like this towards you. I think she is afraid to accept the fact that you have Lupus. I have a sister that is like your mother. I know how bad it hurts to be treated the way that your mother is treating you. You have gotten some good information from several members here. I deal with my sister by refusing to discuss anything to do with Lupus with her. She will ask how I am feeling and I just say as good as some and better then others and let it go at that. I hope that your mother can learn about this illness and start treating you better. I will have you in my prayers.

Hugs,
Kathy

DrinkofWtr
01-09-2009, 11:47 AM
Dear Karli,

Unfortunately my family is in denial that I have Lupus and I can't change them. You would think with my Dad having Lupus would help, but it doesn't. My mother will say, "Well look at your Dad, he had Lupus practically all of his life and he worked full time until he was 65+ and did everything else too." Unfortunately, I am not my Dad and I can't work full time anymore. So much for understanding, hey? The only understanding I get is from the people on this website.

karli1238
01-09-2009, 05:20 PM
Its crazy how our families can bem I just got out of the hospital almost had surgery to fix my shunt and my mom was upset but when I say things that are happening lupus wise she says I should not talk about it just believe god for my healing? I would love to be healed but I have to be realistic. I can't act like I don't hurt. I only want people in my live who ubderstand. I'm done with the others. Its such bs...

bonnieb
01-09-2009, 08:05 PM
Well, I can understand how you feel. My mother has no compassion for me at all. She has no clue what lupus is nor does she want to learn. What comes out of her mouth is mostly sarcastic. So I just stay clear of her for the most part. She has been this way as long as I can remember. "Grant me the strength to change the things I can and accept the things I can not". And pick our battles wisely. I always admire the ones that are there for me like a rock. God Bless Them!

Bonnie

Danica01
01-09-2009, 08:08 PM
Very beautiful words Bonnie :angel: Thanks you so much for your post. It upliffted me in a way I can not explain and has added a little hop in my step as I start the weekend :!: Again, thank you :wink:


Well, I can understand how you feel. My mother has no compassion for me at all. She has no clue what lupus is nor does she want to learn. What comes out of her mouth is mostly sarcastic. So I just stay clear of her for the most part. She has been this way as long as I can remember. "Grant me the strength to change the things I can and accept the things I can not". And pick our battles wisely. I always admire the ones that are there for me like a rock. God Bless Them!

Bonnie

karli1238
01-09-2009, 08:08 PM
So true! Thanks I needed that! Hope u have a wonderful night!

bonnieb
01-09-2009, 08:20 PM
You are most welcome! :D

sisterbigbone47
01-15-2009, 05:31 PM
I thought my family understood-until recently I told my daughter that today was not a good to go to the mall-i was not having a good day -she say ok-but the look in her face -was like yea right-my husband wanted me to go to walmart the weather here is cold to me in louisiana 30's and 20's is cold for me-he had this look like whatever-and I said to both of them again I can't do the things the way I used to-I work currently a full-time job-and to me my day never ends- :) [b]sorry had to pause burned up eggs for tuna -forgot they were on-take care of it-I think take them all to the Dr when I go might be a good :idea: I think they still don't understand :!:

med plaquenil lisinopril methotrexate pednisone
ra sjoren's sydrome sle rayuand's

thank u all for listening

be blessed
be strong

bonnieb
01-16-2009, 05:26 AM
I bet if they all sat down with your doctor and had it explained to them, they would see things differently. Maybe even find a Lupus Support Group for you and your family.

rob
01-16-2009, 05:33 AM
Bonnieb,

That's some excellent advice. My father refused to accept the fact that I have SLE, so I took him to one of my Dr. appt's and had him hear it from a medical professional, and it made a huge difference. He wasn't an instant convert, but it set him in the right direction, and he has become very supportive, and as understanding as a person who does not have Lupus can be.

Hey Karli, how are you doing today? Are the headaches still bothering you?

Rob

karli1238
01-17-2009, 09:40 AM
Hi rob! My head feels better. I've had a few small headaches but nothing bad. Right now my biggest issue is that I have to lower my prednisone by 5 mg, double what I normally do. My joints really hurt and I hope I feel better by monday. I told my mom that I was going to be home in bed this weekend and she told me not to confess that.wtf! My body is going thru a withdrawl so I'm going to hurt! I need to just not talk to her about my illness cuz she hurts my feelings too much. Hope u have a better weekend than me.

summerdragonfly
01-24-2009, 06:25 PM
Wow im sorry that your family isn't understanding of what your going through, have you tried asking your mom/family to go to a doctors appointment with you? That is how my current husband found out about my lupus, i explained it the best i could, but my Nephrologist sat down with him during an appointment with me and explained MY lupus to him, and he was able to ask questions and get good answers. If your mom/ family wont go with you, maybe find some good reading material online and print out for them to read. Good Luck and if they still wont listen, then its lucky your have this forum! Im new here but from what i've read there seems to be A LOT of support here! I wish you the best and hope that your family come around.

karli1238
01-26-2009, 10:50 PM
Hi summer- thanks for the reply. It seems like my family is slowly getting better. I had my mom read the spoon theory the other day. I think she got it but can't fully understand. She is trying though. It just scares her. I haven't taken her to the dr but probably will on my next appt. I will have to have patience with her since doesn't understand any medical stuff. Hopefully the dr will help her.

mountaindreamer
01-27-2009, 05:15 AM
hi karli,

I took my daughters to a couple of dr. appointments, and they really learned about lupus, and how they can't fix it, only be here when i need support. They also spent some time reading some posts on this site, and that really opened their eyes. As a matter of fact, the reality was so strong, they had to quit reading what we go through.

my mom, on the other hand, never asks about how i feel, and never shows interest in learning more about my illness. I agree with you, I think she is just scared and can't face the reality of what I am going through.

hang in there, keep us close, and we will walk together.

phyllis

Spanglishqueen
01-28-2009, 10:21 AM
I actually have been letting my parents and husband read my posts and the forum postings and then they start to empathize and understand that what I am dealing with is real and sometimes wishing, hoping, and praying don't make it go away. Baby Steps :)