I am newly diagnosed, and my son is 18, but he still expects me to come home from working all day and then take him to get a haircut or whatever. I've suggested that he read about Lupus and learn, so he can understand how this will change our lifestyle. He just got mad tonight, and wouldn't help me with Dinner and then wouldn't eat. He's a good compassionate boy who is growing into a wonderful man. How do I help him to understand?
http://notdoneliving.net/openletter/id
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ I'm a big fan of the Spoon Theory.
When my mom was going through issues with chronic pain and such, it was hard to accept that anything could happen to my mom. My mom was a wonderfully caring and supportive woman. She did everything she could to protect her children. It's very scary having the foundation of your world shaken so thoroughly. I was angry (not at my mom but at her illness) and frustrated that there was nothing I could do to help. I was unfair to my mom -- yelling and screaming at her and arguing -- because I didn't know where else to vent my frustration. I said a lot of things I didn't mean. And eventually... I grew up and accepted things.
Your son will likely go through a similar process. It is a bit of a mourning process. He's grieving the old you and trying to adjust to the new you. In the meantime, he's going to be angry. He's going to be upset. And, he is going to act out. You are likely going through a very similar emotional process at the same time.
Give your son time. He'll come around. Have the information available for when he's ready to talk. If you have a local support group near you, ask if he would be interested in attending with you.
*hugs*
Good luck!
-Shu
My kis are 14 and 16. I was diagnosed a little over a yr ado. My son was 13 at the time and he started reading and researching right away, but it took my daughter almost a yr before she started to really want to know what I was going through. I think she was just really scared. They've really rallied around me, an they help me so much, I never have to carry groceries, they are right there to do it without me having to ask. They're normal teenagers though, i still have to remind them to do homework and sometimes chores, but for the most part they really do try to help make my life easier, and they can kind of tell in the morning where my pain levels are, and that helps them to know what to expect from me for the day as far as if i am up to going places and doing things outside of the house. Good luck!
Sorry for all the typos...my fingers swell badly an the knuckles turn red and i can't use them well. so a lot of typos!
Also, I agree with Shu, I love the spoon theory. I first saw it a yr ago. People either read it and say "Wow, I had no idea....." or they read it and don't really understand or care....those are the ones that I don't expect to ever understand.
Thanks so much for all the great advice! I emailed him with this site and the open letter.
Sunrise,
My two boys (18 and almost 23) grew up with me having this disease and while they are extremely supportive and kind they still have problems with it emotionally. They don't like seeing me sick and want nothing more than for me to be healthy. They have always pitched in and helped with everything - it has been a way of life. I worked to be as "normal" as possible - and especially for them to do all the things the other kids did. Sports and all. I participated in every sport and volunteer activity I could. They knew though that I would be wasted out when it was over.
They know all about the disease and what it does. They've educated some of their friends. One of my sons has asked me (along with his girlfriend) to move in with them soon.
I'm not so sure that their having lived with it all their lives was such a good thing, but I see how difficult it must be for things to change so dramatically when they are teenagers.
I can say that ONE thing that I did that made my sons more eager to help was when they became of age to drive! They were given access to a vehicle right away - even if it were my own very nice car, they had access to it. If they needed a haircut, I'd give them my bank card and off they would go. They could do grocery shopping, errand running, school supply shopping - you name it. There were times when I couldn't do any of those things - times like right now. They got me back and forth to doc appointments, the hospital and just got me out of the house. The deal with car brought us closer than we already were because they understood that there was a lot of honesty and trust involved with them using the car and also the bank card. They have both been heroes in my life, particularly my 18 year old!
Maybe something like that could work for you guys?