View Full Version : Its just not fair. Help.

11-13-2010, 08:37 PM
Hi, I am new to this site. My mom pointed it out after one of our recent fights and said maybe someone could help me. She has lupus. She was diagnosed about five years ago i guess when i was ten or eleven. We were really close and had probably the best mother daughter relationship ever. Before she was diagnosed i remember her getting sick alot and saying she hurt but hiding it and still being a normal mom. Then afer, things changed. She stopped trying i guess. Then i was forced to grow up fast, sitting at wee hours in the morning with her in the emergency room while the pumped her full of drugs. I became the mother n a way. When i get sick, it doesnt matter, she comes first. When i get hurt, it doesnt matter cause she is always in pain. And this isnt just me thinking of her first, its her thinking of her first. She is so stubborn and demandng. I love helping her but when she is contantly on my back its less like a good deed and more like something i have to do. Our relationship is ruined and sometimes i just want to pack my bags and leave. Especially lately. See, i met this boy about a year ago. And he takes my mind off the stress that lupus has put on my home life. He makes me really smile. But mom doesnt like him. And that puts a toll on both his and my relationship and me and my moms. I think she thinks he is going to take me away from her, but in trying to stop that and push him away, she s pushing me to the end of my rope. I dont want to spend my entire life taking care of the woman who was supose to take care of me. I want to run and express myself and she encourages that, but if i do and she doesnt like it, i get grounded. I cant take much more of the stress and nobody understands me. I havent stopped crying for days. I dont know what to do any more. I need help.

11-13-2010, 11:31 PM
This is not an easy one to answer. First of all, I'm not too sure how old you are. If you're still in high school - STAY THERE! I've raised five kids and taught high school and I know that it is tough, but it is VERY, VERY important for you to finish as much education as you possibly can.

That said, I've been in your shoes. I'm very sure that my mother had AI issues, but it was never properly diagnosed. She was poorly educated and I'm sure that she had mental problems, possibly caused by the AI issues. I also had to grow up very fast and took care of her while enduring a lot of abuse from her. I once had to drive us home from a hospital in St. Louis when she was too sick to drive. It was over 20 miles and I was only 13!

I graduated from high school early, got a great scholarship and went to college, but I still couldn't just leave her. I was driving home often to take care of her and all of my money went to her. I had also met a boy that she didn't like, sensing that he might take me away from her. Finally, we eloped, and we went on with our own lives. I was very lucky and had found the love of my life - we've been married for 34 years now. However, not everyone is so lucky, so BE CAREFUL.

About a year after our wedding, she finally got over her hard feelings - a grand-daughter helped! For many years after that, I would help my mother as much as she would let me, but it wasn't easy. I eventually had to place her in a home, and she totally lost her mind before she passed away. It was pretty rough on me.

Now, for your situation. Your Mom has taken a big step toward understanding what is going on with her by finding this site and by seeking the right treatment. My mother could never understand, was angry, and took it out on me. Be thankful that your Mom is taking those steps and be supportive. She'll love you for that.

Please understand that autoimmune issues can cause us to have mood swings, horrible headaches and even depression. Being a teen-aged girl can do the same to you, too. So try to understand that your Mom is going through some physical and emotional upheavals at the same time that you are. That isn't fair, but it's what you have to deal with.

At the same time, I know that you are wanting to have some independence, too. Since you are still getting grounded, I'm assuming that you are under 18. I know that you don't want to hear this, but you still need your Mom at your age. Just gradually show her that you can accept more and more independence and responsibility. Is your guy acceptable enough to Mom to come to your house? Could he visit, be helpful to her, and become her friend? If the two of you approach her as adults and work on having an adult relationship with her, you might both win her over. If he's not willing to try to have an adult relationship with your Mom, then perhaps she might be right about him - I'm just sayin'.

I wish you luck, sweetie, and I hope that this helps. As my hubby always says, "This too, shall pass". It doesn't seem like it to you right now, but you've got a lot of years of life ahead of you. Choose wisely, because the choices that you make now may affect you for many years to come. Try to have a good relationship with your Mom. My four adult daughters are now my friends. We enjoy traveling together and share much in our lives, even though we all live in different states. I wish that for you and your Mom someday.
Keep in touch.

11-14-2010, 12:18 AM
OK, I have daughters about your age, 21 and 19, you haven't really said, but, Im guessing you are at least in high school, so, here is my take on it all.

You have so much time to make this decision. Take your time, be certain that you are not making a decision for the wrong reason, like leaving home to get away from your mother rather than leaving home to start a new phase in your life. If he is the right guy for you, then be careful not to put him in the position of being a default rather than a choice. Your mother is a grown woman, and really can take care of herself, and you are a young girl that has her whole life ahead of her. Your mom may feel that she needs you there, but, what if she didn't have you at all. What would she have done. How would things be different. Perhaps the alternatives that she might have had to look at then, may be something to look at now. I am not one to advocate for young people to turn their backs on their family, and I think you want to recapture that relationship you once had with your mother. Keeping things as they are is going to continue to make you unhappy and resentful. Turning your back on your mother will make you turn that resentment on yourself, especially if she is suffering.

Just think things through, and sit down with your mother and talk to her, really talk about all the things you just told all of us. Whether she listens or not isn't as important as you telling her what is in your heart. Get it out, but, do it with the intent to find a new way to care for each other. Not as a way to just vent frustrations. Maybe you can both find a middle ground, maybe not, but, at least you will have tried. It's obvious that you love your mother very much.

Take care you yourself, be patient with your own feelings, and take your time before making life changing decisions. We are all here for you.

11-14-2010, 08:39 AM
Thank you for that Marla. To be honest, i was kinda venting last night and reading back over that it sounds really harsh and i know it would break my mom's heart to read it. It is how i feel, but i could have worded it differently, but it seems like you really understood. First off, i would NEVER drop out of school. At sixteen, it is still illegal for me to do so, ut even if it was , i wouldnt. I carry a 5.0 gpa and am in all upper level/ college courses. Ifeeel like you really understand me though. Though my mom doesnt exactly ABUSE me, she tends to take out all of her frustration on me. She uses harsh tones alot when it isnt nessacery. Since i can remember i have been afraid of her. Her temper literally frightens me. IDK if that is just her or if it is the lupus but either way it is true. will continue to help her out no matter what because she is my mom and i know that once my hormones are back in wack we might get along better. As for my boyfriend, he has stuck around for. . . well itll be a year in twelve days. He has dealt with not being able to see me for a month, not being able to go on dates, not even talking for days, and he still loyally waits for me. He has come over a few times but even i can sense the hostility towards him. He cannot be comfortable here and i dont blame him. He can hold my hand without gettting a dirty look from her. He hasnt come over in a couple months and i dont blame him. As for my relationship with my mom, in some cases we are closer than we would have been had she not gotten sick but in others, she doesnt understand me. love being on stage and singing and dancing. I wan tto do that more than anything. She thinks i only care about school. She only focuses on the academics of my life and she just blows off what i love to do. I got on this site to try to stregnthen our relationship and hopefully, it will. But it wont be over night. I hope one day i can be friends with my mom. thank you again. ~Allie

11-14-2010, 08:52 AM
I am sixteen. I could tell you were wondering. I do want to leave to start anew phase in my life. This one has been devoted to my mom and not to my feelings. I feel like you really understand me. I could never let myself turn my back on my mother, but your right, i already feel resentment towards her and that isnt healthy. I have spent my whole life thinking that she needs me, that i have to be here to take care of her, but your right, other people do it without someone waiting on them hand and foot, she could too. And maybe im just feeding her sickness by letting her do nothing but sit on the couch or im bed and sh e would feel better if she got up and got friends. I have tried to talk to her and it gets bettter for a while but then it goes right back to the way it was before. I want to take care of my feelings but when i do she calls me selfish, even after all i do fo rher, im the selfish one. Thank you for your words. ~Allie

11-14-2010, 01:09 PM
Dear Allie - Wow, I feel like my son wrote your passage. Our relationship was so tight and we did so much together for years. I got sick with fibro a few years ago but could still function pretty well. The Lupus came on in June this year and the fatigue and pain are simply unbelievable. I spoiled my son for years -- you see, he has mild autism as well as is bipolar with psychosis. Before I was ever sick, he was the one who was in and out of psych wards but we eventually got the meds right and I was able to take us on vacations and camping. It was the best few years ever!! Our relationship is based on respect and courtesy and we try to help each other whenever possible. But I'm going to tell you something about having Lupus -- it's hard and it hurts! Me, personally, I need help at times. When I ask my son to go with me to the store it's not to keep him from his friends or computer, it's because I'm dizzy and deeply fatigued and I need him there in case I literally fall to the floor. As far as wanting him around, that's based on the most basic of all emotions -- fear. My lungs and heart are slowly shutting down. Some nights I know there is a good chance I'll end up in the ER. I need him there to make the phone calls to my parents for his care and make sure our cats and dog are set up at least for that night.

No, it's NOT fair to you guys. A 16 year old (my son's age too) is far to young to have to be a caretaker and if your mom is like me, the guilt is almost as overwhelming as the illness. You sound like a smart girl. If it looks like you're being taken advantage of (mom just wants company), then it's time to go see a friend or do something for yourself. But if mom is truly sick, you'll be glad you stayed around to help. I try to give my son room but like last night when I really needed him to go to the grocery store and he refused, I got angry. We're made up and I explained that I would only ask him if I truly felt I needed him and I needed him so I got very angry when he acted selfish. If at all possible, try to talk to your mom with respect but self-respect too. You're important as a person. You have a right to be a teenager. Explain to your mom that hospitals have caseworkers that provide help to the patient. You need respite and you need your life.

Well, I've gone on long enough. My point is, Lupus is terrifying and we cling to the people we trust but you're 16 and you have a right to have a childhood. It's time for your mom to find others to help. There's the hospital, her insurance, and her doctors who can all give her direction. Balance might save your relationship and God knows, a girl needs her mom and vice versa.

Take good care. Continue to vent here. We really are in your corner.

11-14-2010, 06:12 PM
Serand4- Thank you for your words. I see that you understand the problems that lupus causes between a parent and their child. And i would really love to be there for my mom and never go anywhere. When i was younger i always planned my future with her right by my side. I would dream of building a beautiful home and her having her own wing of the house so she could stay with me. I was ok with the want to not let go. I embraced it. But then it became a grip she had on me and it has restricted me from beng the person i want to be and from expressing the true me. And yet again i was ok wit hthat until recently, when i broke through my shell. the other day, i went to walmart, bought hair die, came home, and died my bangs hot pink. I didnt think to ask her. I knew she wouldnt like it but its my hair. It expressed my personality. I am now grounded for two weeks for going behind her back. And i guess i should be because i did do that. But why should i have to conform to her? so i can always be her little girl? I dont find that fair. my hair doesn thurt anyone, it simpl emakes me more confident in myself. I feel like she doesnt get that. in two months, the color will fade and itll be a distant memory but the hurt wont.I feel like she thinks me being my own person will take away from my attention to her. `But it wont. The kids of lupees need to be able to express themselves. ~Allie

11-16-2010, 01:10 PM
Dear Allie - Honestly, I think the hot pink bangs sound pretty cool, but for some reason I really remember my teen years very well and I was pretty "creative." Hey, I did a goth coloring in my early 40s and frankly, I got a lot of positive response. I really believe the teen years through the early 20s are really tough years to figure out how you feel about anything, especially important relationships. You add sickness to those relationships and it triples the confusion. My mom was untreated bipolar and in menopause when I was in my teens and I have a tendency towards depression so that was one complicated relationship. My poor dad didn't know whether to wipe his watch or wind his ass! Back in the old days, there weren't computers or cable (and the world was still in black and white!), so I wrote. I look back at my poetry and short stories and they were pretty deep for a teen. I'm very glad I kept them. They gave me a way to express myself when no one else understood what I was trying to say. I was also fortunate to have a lot of friends and I was involved in a lot of after school activities. (Anything to get out of the house!) Anyway, flashback over. My son has changed so much in the past few months and as a mom, I have to admit it's really confusing for us, too. These little people that once adored us suddenly find 90% of what we do to be stupid or ridiculous. Once they wanted to spend a lot of time with us and now if we can get 20 minutes a day, it's a great day. Another thing is suddenly my only usefulness is to provide money. Since I'm sick and filing for disability, there just isn't much to give out. My popularity continues to decrease! But we have our moments when we can talk and I really try to express my feelings and why I say or do the things I do. Most of the time, he does too. I hope things get better!

11-17-2010, 05:07 PM
My mom and i have been getting along alot better the last couple of days since i started using this site. I have come to understand her more in a way and we are much happier. It is starting to go back to the good times and hopefully this time it will stay. I dont think that would have happened had i not gotten on this site. I know it sounds stupid to say after only a week but honestly after the first day i was already somewhat. . . . happier. I havent cried for days and that is something new. idk. just thought it was something to say. I really really appriciate all the stories i have read on here and know that it will forever help us. Thank you. :) ~Allie

11-17-2010, 06:24 PM
Hi Allie,

I want to thank you as well. You made me think even more about how hard this is on my daughter (she is 15). My daughter and I are so close but this is so hard on her. What I ask of her is not fair and if I could take it away I would. You put into words what I know she would like to say. Thank you for that. I am glad things are getting better at home. I know it means as much to your mom as it does to you

11-17-2010, 07:54 PM
Hey Allie,

Thanks for sharing what's going on at home. My kids are young (3 &5), and I know that they have a very different life than they would if I was well. I'm certainly not the parent that I dreamed of being. You sound like an amazing young lady, and I'm glad this site is offering you support, and that you are mature enough to accept it.

Good luck,

11-18-2010, 06:56 PM
I'm thrilled to hear you guys are doing better too! There is enough stress in this world already and heaven knows, illness just adds too it like a big old boulder! You keep writing to us if you ever need to. We're here, we care (and frankly, I liked the story about the pink bangs!). Take care girl!

11-19-2010, 08:06 PM
Hey Allie,
I'm glad that things are going better for you and your Mom. Have a good holiday together. High school will be over before you know it, and then your life will really get exciting.
Are you starting on a college search yet? With great grades and advanced classes, you might qualify for a good scholarship to a good school.
Keep us informed about how it's going. I'm so glad that we were able to help you ladies.