posted
So my neuro symptoms are really noticable to the kids--and amusing. I have two teens that think it's hilarious that I mix up words, stutter, forget what I'm doing, take too long to register what they're saying, etc.
They do not know that these symptoms are part of my illness.
We didn't share too much with them because we didn't want to scare them. They stuff they see is enough to make them worry about me (meds, walking issues, in bed a lot, headaches) so we didn't think it necessary to go into further detail.
But my teens find some things amusing that incredbily frustrate me. I want to laugh it off with them, but I just find myself feeling defensive and biting my tongue.
How much do you share with your kids, and does it differ by age? I have quite a range.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
| IP: Logged |
scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
All of it... We sat down as a family and watched Under our Skin. Then we let them ask any questions.
The biggest and most important question our girls had was "Are you going to die Mommy?" Once we re-assured them that I'm not going to die from Lyme they were so relieved! I think with kids if they don't know something they tend to fill in the blank and that can be a lot scarier than reality!!
When my now 6 years old was diagnosed 2 months ago she was prepared and was NOT afraid at all. In fact, she told me today when she saw her classmate took her medicine she asked her why and then she proceed to tell her friend that she has Lyme disease so she has to take a lot of meds too. And she said Lyme is from a tick bite and can make you very sick. I'm so proud of her!!
Anyway, they were 5 and 12 respectively when we told them.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
| IP: Logged |
posted
Teenagers are a difficult age, in any case.
When I first was dx and tx'd, I tried to let both my kids know anything they asked. Of course, the walker, the IV in the chest, all that is pretty evident. My word finding difficulties weren't made fun of, but I think the constant talk of "lyme disease"..all of my reading, doctors, medicine, etc..got old for my teenage daughter.
She finally just said, "I don't want to hear anything else about lyme disease"...so I didn't share with her.
About a year later, she went off to college. Since then she's asked me how I'm feeling, even asked if she will get symptomatic at some point, etc..
My younger daughter was very young when I had my IV, and began tx herself with orals at age 5. She's been very supportive and tells me her sx as they happen. We are very open about it all.
My hubby acts like he doesn't have sx of lyme, but I think down deep he knows he's getting it, as we both can see his sx mimic what I've been through as well. He just doesn't talk about it, which is fine, whatever works for each person.
I think each spouse, child, parent, or friend is different in how they deal with things and what they are comfortable with. I'm all for honesty and disclosure, but I respect the wishes of each person and what they can handle at the time.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
| IP: Logged |
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
My son had Lyme for 3 years. He's 16 now, he's lived with this watching me since he was 7. It's an everyday for him, sad, but he had no choice. He does regular teen things, but Lyme is always there.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
| IP: Logged |
posted
My kids are 13 and 14 and I tell them everything. I tell them in a matter of fact way and at the same time down play anything that might scare or worry them. For instance I just recently went to my first LLMD appointment and I told them there was a chance the LLMD might want to do a PICC line (I was hoping).
I told them about it, but told them it was no biggie (I've had 11 surgeries since 2001, so they are used to stuff like that) and that if I did it, it would get me better faster.
I let them know what is going on, but I don't talk about "being sick" all the time and I do whatever it takes to go to their games, school functions or whatever they have going on.
And my kids do make fun of my cognitive issues, but it's all good. They used to call me Dory, from "Finding Nemo", now they just shake their heads or do the eye roll. I also think they are starting to "play" me and my lack of memory. i.e. Kids will show up at our house and my kids will say "we asked you the other day if they could all come hang out"...ummm, ok.
I do think that if kids don't know what is going on they make up scary stuff in their heads. I have always told my kids what was going on, without giving them all the gory details and scaring them that way. That's just me, everybody has to do what they feel is right.
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
| IP: Logged |
posted
Sbh, my daughter (19) is the same way and my son (15) is either totally oblivious or doesn't care at all. I get these whole body shudders, or arm jerks. She would laugh and say "my mom has tourettes" I never said anything because I have not been dx with anything. I have a 5 year old, and. Of course she is the most compassionate one, but she's very sensitive, so I try to play it down so I don't worry her, but I feel bad always saying "mommy doesn't feel good" I guess it depends on your kids and you know them better than anyone. Good luck
Posts: 21 | From Northern Virginia | Registered: Sep 2011
| IP: Logged |
posted
I have a 9 year old daughter and she comes right out and asks me to "tell her more about Lyme". I think she worries that she might have it, though. I hate putting that concern in her head before knowing if she does or doesn't have it.
I think I'm going to have to break down and get her a cell phone though. I thought she was too young for one, but yesterday I dropped her off at school completely forgetting that it was a "late start day". Luckily, they just put her into the morning care program for those couple of hours. I always watch her to make sure she enters the school completely before I drive off, but it would calm my nerves if I knew she could call me back if she had to.
-------------------- IgM: [18++,31+++,34++,41++,83-93+] [39 IND] IgG: [41 IND] Positive according to IGeneX. Negative according to CDC. Negative for co-infections. Currently treating for Lyme, Bartonella, Babesia Posts: 225 | From Minnesota | Registered: May 2011
| IP: Logged |
posted
Wow, thank you so much for all the responses!
Scorpiogirl, we did tell them that I was sick, just didn't go into all the big details. Part of it was politics and needing to protect my job and I didn't want them "slipping" information to the wrong people. I'm starting to not care about that. My husband nixed watching UOS because it scared him and he said would terrify the kids. That's great you can be so open with the young ones.
Twicebitten, you're right that it has to be individual. We just have such a range and I want the family to be on the same page, but it's hard with the five-year-old being so sensitive. I have been lucky that I have not had the big equipment to deal with yet.
LymeinPutnam, for sure your son would have to know, having suffered himself. I am glad to see he is living a mostly normal life.
Mom2kids--your kids sound a lot like mine. And I agree with your point (and scorpio made it too) that they might make up worse stuff in their heads. And to Alice too--we probably should give the teens the rundown of my symptoms. And if they don't want to hear any more about it, that's fine.
Alice, I appreciate your perspective as well. You don't have to have kids to know people. I have had to be careful with my hubby too about how much I talk about it.
Mami, our kids are almost the same age span. And yes, it's the five-year-old that I think presents the greatest challenge. He is so sensitive and always giving me big hugs and telling me he asks God to make me feel better (oh that's rough).
Jenifer, you hit the nail on the head, really. I think that's the real reason, besides the job thing, that we held back initially. I don't want them assuming they have it too, since they went on the same trip where I was reinfected. I DO suspect one child has it and we are watching him closely but the others, seriously doubtful. One is a real drama queen and, despite having NO symptoms, I guarantee she'll be freaking out that she has it too. Sigh.
Lymetoo, you're right, as usual. Bottom line, we need to share more. We'll just have to be strategic about it. My hubby has a new task to prepare.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
And I agree with your point (and scorpio made it too) that they might make up worse stuff in their heads. And to Alice too--we probably should give the teens the rundown of my symptoms. And if they don't want to hear any more about it, that's fine.![[Wink]](wink.gif)
Printer-friendly view of this topic