Sometimes I hate what Lupus does to my family

This has been a tough week for me, the weather changes have really been getting to me, and I just feel blahhhh.

The worst thing this week, was going to counseling with my family, and having to tell my son that its time for him to move out. He'll be 19, and he's a great kid. He's never been in trouble and has worked at his first job for 10 months. He walks to work, and has paid his own way in school this year. I had been hinting that its time for him to experience it on his own after he graduates. Since he turned 18, he's had the attitude that he's 18 and can do what he wants. And that's true, he can and he should! But that causes friction between him and his step dad.

I've had to step back, and stop pressing him to do things my way, and go to college if he's not ready. Its ok for him to take a year, and find his way, and decide what he wants to do. He's changed his mind several times this year, and that's ok.

I know it broke his heart, and afterward I wrote a letter to him in a journal that I gave to him. I need to know that he can take care of himself. I don't know how this disease will affect me, and what's next for me. I need help taking care of myself. I just lost my job due to this illness, and will lose my insurance at the end of this month. I feel like I'm losing control of the things I used to be able to handle. I don't want to throw him out, but I NEED to know that he doesn't depend on me, that he'll be ok and independent.

This is the part I hate about Lupus : (


I am sorry you are going thought all of this! I have been there! It is a hard part of our Journey in life!

My husband and I always told our two boys if they were in college the could stay home! Our oldest son left when he turned 18, because like your son he did not want to go to college right away. But little did we know that our youngest son would stayed forever (LOL!) because he was in a doctoral program of Pharmcy!

Our youngest son would tell us all the time that he was an adult and could do what he wanted (i.e.: come in at all hours of the night; bring girlfriends home and have arguments at all hours of the night) of course I was still working and with all the stress my lupus was out of control! Unlike you, I was the one that wanted him to move out but my husband was totally against it! My youngest son believed that there was nothing wrong with me! Well push came to shove and we gave him three months to move out and he did!

The moral of my story is this all the worrying in the world will not define how your son turns out! After tons of worry and some tuff struggles, both of our boys did just fine! I could not be a prouder Mom! As a mother it is in our DNA to worry about our children! We will take that to our graves with us! However I found life again with my husband! There is something to be said about empty nesters! Don’t sweat the small stuff, your son will land on his feet! You have instilled in him what he needs now let go Mom and let him Fly! Besides worrying and stress of situations only makes us sick!

I am hoping for the best of the situation Trisha…Deenie


I hate you are going through such a hard time. You are giving your son a gift by giving him 'wings'. He may not realize it right away, but it will come. I don't think one can truly understand Lupus fully unless you have it. But consider your own care and be kinder to yourself. Have faith in the type of parent you've been to him as you feel it's time for him to experience living on his own. He may make a mistake or two, but he's also shown you responsibility in holding down a job and paying his way.

You are a wonderful person Trisha. If you need to break things down into 'one task, one day at a time' then do it for yourself. Giving up "the old life" can be hard because it's familiar, but engaging in a new one is good too. Take time for Trisha to ensure your life still is of good quality. I don't think anyone is crazy about a lot of stress and change, but it's the one thing that is constant in our lives.

I pray you find solace in the decisions you've made and will make in the days ahead. I pray you can find peace and relaxation on some level. I pray that this stress will leave you soon and you can focus on feeling better again. Just know you've got a bunch of people here who care about you. Hoping for brighter days ahead for you!



I hate that you're going through all of this. I think that by giving him that letter, he will understand better. If he doesn't understand now, he will when he gets a little older. He'll be ok. Sometimes boys need that nudge to get started on "life".

Take it easy on yourself. You're giving him the wings he'll need and use for the rest of his life like Vicky said.

Hang in there! You're an awesome person and I'm sure an even greater mom!

I'm so sorry for what you are going through. That stress can really take a toll. My daughter went to a college 9 hour drive away right after she graduated high school. She suffers from a chronic illness called Ehlers-Danlos symptom. The connective tissue in her joints is failing causing her a great deal of pain. She also suffers from depression. Her joints are also hyper mobile. It doesn't take much for her to injure herself. She tried to handle being away from home, but she was frequently calling me crying that she just wanted to come home, that she couldn't handle it anymore. We decided that she should take a year off, come home, and see if we could go through doctors until we find one that understands Ehlers-Danlos. She has been here since December and it has been a real rollercoaster for all of us. I am in so much pain, and I am so tired, but I feel the need to be super strong wonder-mom to get her through this. So far, she has had one successful knee surgery and has changed her depression meds and is somewhat better. I am like you in feeling that she needs to be able to take care of herself and find resources for herself. I pray that you and your son find a solution that takes the stress off all the family. You need to rest and take care of yourself!

I have had Lupus or diagnosed when I was 17. I had three daughters before my 22nd birthday. I struggled of course, being a single mother at that time but I made it and think it would be a whole lot easier for someone with children. Now, I have one that has symptoms of Lupus and depression and the other two have ADHD and their own set of needs. I struggle all the time to help them because I can barely take care of myself. I do have to say I am glad I have so much to keep me going because my bed was becoming my best friend and that brings on more health issues.

I have had plenty of problems getting my girls and family to understand what I go through. It’s so hard for someone to have true empathy or sympathy if they have no clue as to what a person suffers. It breaks my heart when I give my children so much and I don’t feel like they care or think there’s nothing wrong with me. I just know they love me and I don’t hold them accountable for their feelings because of the difficult age they are. One day I am sure they will understand. It’s just a process for others I guess.

Know that you are doing the right thing. My chilren aren’t even at that age of moving out yet and I’m already worrying about what the future hold for them. Have faith in yourself for raising you child and that they havegood enough since to have self preservation. They will have obstacles but will learn. We can’t hold thier hands forever, even though we wish we could. We will always be parents but there is also a time for them to take of life and make decisions for themselves.

I’m sorry but I’m not going to be as supportive as the other folks that replied. I was told by my mother to move out on my 18th birthday. Some birthday present, huh? I felt betrayed and abandoned and I made bad choices because I had no one to guide me at such a young age. I married an abuser, way too young. I got pregnant, way too young. I turned into an alcoholic by the time I was 21. I felt worthless because I felt abandoned by my family. I swore I would never do that to my kids. My son is now 18 and I’ve told him he is welcome in our home for as long as he likes. He is a great kid. I know if he had to he could take care of himself. I don’t need to push him out to prove that. He will start college in the fall because I TOLD him he HAS to go. A child will go nowhere in the workforce without a college education. There isn’t an 18 or 19 year old out there who doesn’t need mom or dad to help facilitate the whole college thing. As a parent that is your job, no matter how sick you are, to prepare your child for the world. I suffer from systemic lupus as well, and I did it. Your son will never go to college if you don’t do the work to get him in. The “year off to think about it” is the biggest mistake ever. Your story makes me sad and angry.

I can't believe your making a 19 yr old kid move out because he makes friction with his step dad. Your child is your first priority, if the step dad doesn't like it, too bad. Sounds like you need to put your priorities in order. You can apply for disability & Medicare if you can't work. Your son should go to technical school or college or his job prospects will be bleak. It's normal for 18 yrs olds to want to be in charge of their lives even tho they aren't ready. Don't let Lupus make you kick your son out of the house, you'll never forgive yourself.

Wow...a bit harsh. I can speak personally in regard to the "going to college because Mom and Dad said so". I did and I ended up on academic probation. I was not ready then, but ended up going back to finish my degree at 29. You know what it took? My parents loved me enough to let me make mistakes and learn from them. I worked the crappy jobs long enough to know that I didn't want to make a career out of them. It was then I appreciated my education. As for preparing a child for the world, did she not say he was holding down a job and had paid his own way for some time now? Not every success is solely education and immediate after high school. It doesn't make a parent bad for encouraging a biologically adult child to seek his own way. If your health is to the point where you worry about how much longer you'll be fit enough and she said she just lost her job, wouldn't you think it be wise to talk to your child about the possibilities if he is able to work and you aren't? The friction wasn't the only reason listed. But again, consider what stress does to a body that is already suffering. Priorities? Really? Her priority was to make sure her son could survive because she was worried about him being able to do so. Is that selfish? I hate that you had different experiences and they weren't good. But speaking as a former 19 yr old without a clue, I appreciate the road my parents had me take. I respect it and appreciate my education and opportunities extended to me so much more. I know my parents did what they did out of love for me- not hate. I own the mistakes I made (and I made a lot). But I also am grateful.

Artchick, Ben's Friends has a new community for Ehlers-Danlos:

I hope you and/or your daughter will join it. There are some wonderful people there, just as in this community.

OC Gal, each family situation is different, and this is a support group, not a judgment group. Trisha has already expressed that this is a difficult decision for her, and I am sure she has thought it through. She needs to do what feels right to her in this situation.

PS, I understand you are speaking from your own experiences, but there are many 18 and 19 year olds who make their own way through college, and many who find fulfilling careers without college. And on the other side, there are thousands graduating from college with piles of debt and no job offers. There is no simple, black-and-white, wrong-or-right here.

I meant I think being out of the parents house would be a lot easier for someone without children. I was given choices and didn’t do the best thing all the time but I wasn’t a bad person, I wasn’t raised in a good environment. I was in foster care for a while because choices my mom made in raising me. I think with what I went through and did to myself, that I turned out pretty darn great considering. We have to show strength too. I have let my kids walk all over me sometimes when I’m sick and it has made things difficult. From what I am hearing, her son is demanding his freedom even though he lives under their roof. When I did have to move back home for sickness reasons, I respected and honored the rules of the house. If he doesn’t pay the bills then he should at least show her and her husband some kind of respect by honoring their house rules. I don’t think it’s really her husband trying to make her choose between them. He is providing their family with a roof over there head. I do feel he needs to be understanding of her feelings because that is her son too. If there are younger children, it could influence them in a wrong way or maybe he doesn’t want to be walked all over in him own home. We all as parents know how it feels if our child isn’t where they should be and we have to lose sleep finding or waiting up for them. Consider everything thing. Know it might be a hard choice but it’s never perminant. If he just can’t make it on his own then there is always a chance of reopening your home to them. However, make sure there is a contract or verbal agreement set in place so there won’t be friction in your home. I understand letting your child stay at home for as long as needed but am also for them having a since of responsibility and respect for the people who are providing them with shelter and stability. Don’t be so quick to judge because A: you aren’t aware of all the circumstances and B: you might not have had to make this dicision with your own children yet. We are here for suppose not criticism. Be kind and stay blessed.

Amen. I was just writing my thoughts on this but you beat me too it lol. My spouse didn’t even finish high school but he was determined to help me, my girls and himself so he found a company that helped with CDLs. He signed up, got his CDL and has a contract to work for them. There are options, sometimes it just takes determination.

dancermom said:

PS, I understand you are speaking from your own experiences, but there are many 18 and 19 year olds who make their own way through college, and many who find fulfilling careers without college. And on the other side, there are thousands graduating from college with piles of debt and no job offers. There is no simple, black-and-white, wrong-or-right here.

my son will NOT have piles of debt when he graduats college, because i worked my butt off and skrimped and saved up his college fund from the time he was born to me at 18 years old. a college educated individual has a better future outlook than someone without. its a fact. i stand my ground on the inappropriatness of pushing your child out of his home at 19, "technically" adult, or not. my childs home has no eviction date for him. no childs should. and i respectfully disagree with you on the issue of "many kids put themselves through college." college is expensive and requires slews of paperwork and alot of involvement from mom and dad. the whole process with my son took the better part of two years. finding the right college, doing all the necessary paperwork and financial end of it. no 18 year old i know of just gets up one day and says, "im going to apply to college and im going to do hours of paperwork and im going to do the whole process myself." did you know that an 18 year old college bound student can't even take out a student loan without a parent or guardian cosigner? im sorry but this mother is taking the easy way out and failing her son because shes sick with lupus. that is no excuse. im sick with lupus too, but my kids come first. no matter how much this disease ravages my body, no matter how terrible i feel.

dancermom said:

PS, I understand you are speaking from your own experiences, but there are many 18 and 19 year olds who make their own way through college, and many who find fulfilling careers without college. And on the other side, there are thousands graduating from college with piles of debt and no job offers. There is no simple, black-and-white, wrong-or-right here.


My son is 24 and started living on his own because of the same issues when he was almost 19. It is very difficult for kids these days with the economy, but a roommate situation can help.

It's time to really start fighting for your SSDI. I would get in touch with an atty that specializes in that. I know we try to do it on our own, but with the necessity of home care, it's very important. And if you lost your job because of your illness can only help your situation.

Good luck my friend,



Geez some people think they have all the right answers. Here is your parent of the year award ps.

Every one has the right to raise there own child in a way they feel is best. Did you not read about her son being defiant? If her husband is paying all the bills and his rules aren’t being honored, I respect the fact that they do what they have to so they keep control of their household. Anyone expecting someone to not consider there spouses feeling is absolutely being unrealistic.

I don’t think her son would be willing to support her through the trials of getting disability. She is going to family counseling so obviously there are issues due to the friction. I don’t think she is actaully blaming this on having Lupus however I am sure that the stress she is going through isn’t helping her cope with it either. Coddling your child doesn’t make them better people. It makes them week and undetermined. Sometimes it takes tough love for them to appreciate the blessing they have been given in life.

I think she was just looking for other peoples thoughts not criticism from her lupus family. Consider the problems that can arise from keeping a defiant adult child in the house. It’s wonderful when we can do for our kids but something I know from my own childhood and daughters is that things are more appreciated when we help ourselves achieve goals.

My oldest two girls already have scholarships awaiting them and have great potential to earn more.

Maybe the best thing to do is bring this situation to God and see what he thinks is the right thing for your family. Do not stress over it. Parenting doesn’t come with a manuel. We do our best and pray we did it right and if we didn’t, we will someday have the chance with our grand children. I sure hope that you find peace no matter what comes of this hun. Keep positive and stay blessed.

Thanks dancer mom!

dancermom said:

Artchick, Ben's Friends has a new community for Ehlers-Danlos:

I hope you and/or your daughter will join it. There are some wonderful people there, just as in this community.

Oh gosh Trisha, that's terrible about losing your job and insurance. I think most of us understand this stage of your life too well You may want to consider applying for disability because it often takes a couple of years but at least your medical costs are usually covered while on it. I think the statement "I don't want to be a burden to my spouse/family" is one of the most common statements I hear. yesterday a friends decided to go into an assisted living home to stop being a burden on her husband and son. others have just prayed to die so they won't be a burden, some have done more drastic things. I remember one lupus friend who got a divorce because she could barely keep her head above water and care for herself, much less do all that is expected in a marriage. I guess it depends on the severity of your illness and the degree of support of your family. Please know that good things can also come from illness. it's almost like a fast way to learn all the virtues that make us better people. THings that most people may not learn if they never struggle like we do. We learn to slow down, enjoy the moment, take hold of the good times while we can, we learn compassion, long suffering patience, faith, and so much more. I wish you the best as you go through various stages of this illness.


Oh Trisha....I know how you feel, I had ITP at 27 and could not be near anyone and that included my daughter so my Mother took over....when I say took over I mean she would not give her back when I got better....and I was a divorced mother with no child support at that time...way back when....LOL....So even though It took me a spleendectomy and prednizone coma...I recovered ...well what you call recovered ...lupus and everything went and kidnapped my daughter back ....they did not have proper claim of her and I am there only child, my mind was fine my body was a different story but hell or high water I was going to go back to work at the mill ...and I did...this was parents stopped talking to me for a while but in the end....time heals all...and we came back together to have many more laughs and you need to let your son grow up....its your time and his....he needs to learn how to survive on his own. I would of never had the guts to steal my daughter back if I would not of moved out of my parents house and started working at the age of 17. I am not saying for him to do that, but kids these days expect to much help from parents...( I think we are to soft ) ...

I know there will be sleepless nights....but thats what we are here

with hugs and lots of love...