Just Informed That My 13 Y/o Daughter Is Having A Hard Time With Me Being Sick.... What Do I Do?

[hilbiligrl]

Ok... My family helps me with both my teenage children..... before i got bedridden sick, i was their homeroom mother from kindergarten through 5th grade, done their parties (they went to a private catholic school during grade school), and even was a lunch volunteer, went to all their school trips with them, etc. But i was sick on and off during those years, gradually got worse to where i am now these past 3 or so years.

My mom told me and also my sister in law told me that my daughter, 13, is not dealing with me being sick well at all. They found a note in her back pocket she wrote to a friend (they were washing her jeans and found it....) but she wrote all about my illness, and that she worries about me all the time and that she would die for me and would do anything to make me better, etc and also how much she hates school now, and her teachers.... and she's not one to 'hate'.... she is one of those type personalities who likes to please everyone......

Also, her teacher told me basically the same thing about a month ago and that it is affecting her grades, in a bad way.

Now, I don't get into any details with the kids about what i go through, or hardly anyone, cuz well i just don't think the 'outside' world to 'us' believes me half the time. But all my daughter knows is that i pass out some, vomit alot, diarrhea alot, headaches and im severely weak and sickly alot. She doesn't know about the unfathomable stuff and the unnerving stuff that comes along with this. And i don't talk about it around them.....heck, i have a hard time believing this stuff happens/is happening to me...... but I will have to have my mom/dad or my brother/his wife to come get them and/or take care of them on my worst days where I wouldn't dare let them see me go through what i go through. (they have their own bedrooms set up in my home, my parents, and my brother and his wife's home... so we strive to keep their lives organized and peaceful, happy and loving and supportive) So, im not sure what I've said, or done, or what she's heard me say to have made her so worried and freaked out. But it seems she's having these issues with my illness for quiet a while now.....

I don't know what to say or do. Do any of you have advice or have been through the same thing either as a child or with your child? My psychologist, who is in the same office as my primary care integrative doc, who both specialize in chronic illness and rare cases....... she had mentioned that once she gets to know me and my disease (i started with her a month ago) that she thought the idea of bringing in a family member here and there would help (once she gets to know me of course... i've seen her 3 times now, hour appts each time... i see her tom again)..... but do you think it would be a good idea to see if my daughter would go to an appt with me with my psychologist (after i discuss it with her tom)? I wander if my psychologist could help relieve some of her worry????

Im so worried now and i have no idea at how to even approach this........ Or could it be more puberty and hormones too??

thanks everyone.....

tennille

[jenglynn]

I am so sorry. I just want to hug you. I am not sure about advice because I am going through the same thing and unsure how to handle everything. I have six children ages 15 (the oldest) to 8 the baby. It has changed ALL of our lives. It look me two weeks to convince my 8 year old that when I would have syncope I wasn't dead. I have a lot of syncope and unfortunately a lot of injuries. The most traumatic thing the witnessed happened on the morning before Thanksgiving. My hubby was gone and I was trying to make my bed and I had a syncopal spell and my bathroom door was open and even though I was not conscious I can still hear the sound of my head hitting the floor and then bouncing and hitting it again (we have linoleum over concrete- its a basement bedroom). I think the actual impact kept me unconscious a little longer than usual because when I was coming to, my 11 year old son was down there because he heard the crash. I touched my head and I was bleeding so badly and he was crying and so scared. He yelled to his sisters to call 911 and Dad and called his older brother to come down... I was still very much out of it and he was asking me questions that I couldn't answer. Both boys were covered in blood and it was awful. Then my 11 year old told his brother "If we lift her up, just enough, I think we will lower her blood pressure enough to stop the bleeding... You apply lots of pressure to the cut and I will lift her up.." so they did and within about a minute the bleeding clotted. I truly believe those boys saved my life. But my poor girls- only the 10 year old daughter was in hysterics. I will ever forget the look on her face. And my 8 year old daughter was white as a ghost and just sat there, covered in blood, holding my hand. I know it isn't my fault, per se, but I will never forgive myself for putting them through that. I wasn't feeling great and making my bed was not that important. I have talked to counselors and therapists about how to help them and have gotten mixed answers. Some have said it may make it worse for them to relive it. Others have said that they may need to talk about it. None of them will ever discuss it with me much at all. There are so many different factors we face with this illness, that it kills me that they have to see even the small parts... but something like that. Will it haunt them forever? It still haunts ME and I was mostly unconscious through it but I STILL hear the sound of my head hitting the floor... and getting to the hospital to find out that I had my 6th concussion was devastating. That was the day my denial ended.

Sorry I hijacked your thread. I wish I had some answers for you. Do you have a church family? Maybe talking to her Pastor may help? A therapist couldn't hurt anything unless she has a phobia about something like that. A close family member she feels comfortable confiding in. I have learned with all of my kids that they will NOT confide in me about anything they are feeling because they don't want me feeling guilty. I wonder if there is a support group/online forum for kids with parents who have POTS? Maybe we could look into starting something like that? That could be super helpful for them. To be able to relate to other kids who deal with this. It breaks my heart that many of us have kids who live with this just as much as we do. My prayers are with you and your daughter. And I have a 13 year old daughter too. If you would like, I am sure that my 13 year old would love to talk to you so maybe we could PM each other after talking to them and seeing if maybe they would like to communicate a little bit with each other and compare some notes and help each other through it. Just throwing out some ideas. Your thread came at a perfect time because I have been really struggling what to do with my own kids. I have basically been in the hospital from the day before Thanskgiving until New Years so that was a whole other struggle as well. I don't want to ignore their mental health and feelings at the expense of my physical help so I am open to any suggestions at all. I will tell you of all the kids, I have noticed the biggest change, personality wise, in my 13 year old daughter. She has always been a straight A student and last quarter she has half A's and B's. I know, not terrible, but not typical. She is moody and crabby. I know it could be puberty too but the situation in our home isn't helping. Maybe all of us working together in the forum can try to focus on ways to help our kids get through this too. It breaks my heart and fills me with guilt (which is useless when I don't do anything about it) that I am putting them through this. I am their mother. I am supposed to be taking care of them, not the other way around.

Love, prayers and hugs!!!

Jen

[pulp]

I had a sick parent as a child. Not for very long, my father did die in cancer when I was 14 after a short battle. What I can give you from this is something I wish I would have had - honesty. No one talked to me about it, that is still my remembrance of it. It was like this you-know-who being in the house that no one mentioned but still knew about and I was so scared. I was so scared he was going to die and he did. I'm sorry your daughter is struggling, I think you should try to really talk to her, make arrangements for a safe place where she can really voice all her concerns maybe not to you but about you. Tell her that that all this must be hard for her and maybe further on explain more about your illness for her - maybe she is afraid you are dying? Everyone around me was pretending or acting as if something was not wrong when there was. It was confusing. I don't tell my daughter, she's just 6, all about how I am feeling but I tell her as much as I can without her having to shoulder any of it. Inevitably she has to - it's due to me we can't do all the things we used to but I try to be as honest as I possibly can.

I totally lost track of school (I was a straight A student) and a "pleaser" like your daughter but I was so sad cause of everything I just lost hope. I got counselling later and it helped me. Maybe that would help your daughter? As a teen it might be hard confiding in family. I know it was for me. I longed for someone to talk to me as an adult but most was hushed down. What I know from that time is what I read from my fathers journals when I became old enough for it.

Love,

Anna

[Lemons2lemonade]

I would try to explain to her the positive effects of illness--which isn't easy. Maybe let her know that its a reason not to take life for granted and that is why illness exists, so that we can appreciate what we do have. And its a reason to do good in school because if she ever does get sick, then she will have something to fall back on. I think its even more important that she doesn't feel sorry for you, but instead admires you for your strength. I would talk to her about what is causing her to hate school etc. and find a way to help her work through those things. I think this is one of those times that you are going to have to be strong for her.

[corina]

tenille, i used to not talk about my illness at all. i laughed things off but of course my kids saw me struggling and in bed etc. while talking to our gp he asked me if i seriously thought i could fool them. he wanted me to be honest with them instead of trying to keep up appearances. he said that when i wouldn't talk to them about me being ill they could worry their heads off.

and once i started talking to them i found out that yes they were afraid i would die, so i explained them about my illness and assured them that although everyone will die someday, and i was quite sick, this illness would def not kill me. i learned that being open to them reassured them and made it a lot easier for them to adjust. we agreed that i wouldn't moan and groan but i would let them know if/when i was too tired for them to have friends over or when i needed their (limited) help etc. it made them much happier and to me it was much easier to not longer have to stay quiet when i felt so sick. they turned out to be loyal, loving and caring and quite independent boys. we always kept talking and not just about illness. my gp was so right, i owe him a lot!

i think once you start talking to your daughter she will understand. i think it's important for her to know exactly what is going on and what she could do to help. that will mkae her feel important and will give her confidence.

best of luck to you and your daughter tenille!

[peregrine]

I don't have any kids, but I spent ten years (ages 5-15) as a daughter of a woman with several stages of cancer (Mom eventually died when I was 15 of her second metastasis). It was rough on me, but not as hard on me as on a lot of folks in similar situations. Most of what I saw day-to-day is not that dissimilar from CFS or POTS - lots of fatigue, inability to get up and walk around, needing help for basic stuff, random fevers and illnesses, staying home from work a lot, tons of doctors appointments, treatments working or not, drug side effects - but no fainting. I have the following thoughts to share:

(1) Mom was always really honest with me (and my sister, when she was still at home) about how she was doing. If she felt crappy, she told us so and why she was feeling crappy (nausea from chemo, fatigue, etc). When the time came for really big news (surgeries, recurrences, end of life care) she would sit me down on the couch (her couch, really!) and talk to me and give me time to ask whatever questions I needed, or just hold me while I cried. Or while she cried.

(2) From ages 8-18 I had a therapist I saw every week and then eventually every other week. Some of this was to deal with issues with my dad (parents divorced when I was 2), and some to deal with issues at school (I got bullied a lot), but a lot of it was to deal with Mom's illness. My therapist had a pager I could call any time - night or day - if I was seriously upset and she would get back to me. She was there at my mom's memorial service, and she and I talked a lot on the phone at various points. She treated me like an adult, which was very important, but she also offered hugs, which was equally important!

(3) On an optimistic end of things, dealing with a mom who was sick all the time was a great life experience, even when it was really bad. I grew up much more independent than most folks, which has helped me along the way. Plus I'm used to doctors and medicines and the ups and downs of specialist treatments with chronic illnesses, which has proved invaluable! And it gave me a lot of insight into hope and making the best of things and all that stuff.

[kayjay]

I also have a 13 year old girl who worries about me. I think a lot of good suggestions are mentioned above. Two things that I would add is that I try to keep her life as normal as possible... meaning I try to keep the focus off of my illness ( hard to do sometimes). She is old enough to manage when she has friends over and I can lay down and stay in my room. She does understand what is wrong with me but I make sure she knows that I am dealing with it and I have accepted it. There are worse things and I am so glad I am alive to be here for my children.

Also bad things can develop character. My children are less judgmental, less selfish, and kinder than most children. Although I wish they had a healthy mom, I realize that they are going to learn from this challenge. I discourage worrying by telling my children that it is a waste of energy.

You know your daughter best regarding therapy. My daughter was not interested. She does talk to her friends about how she feels. She also has a friend who has a sick mom. This seems to help her. best wishes and be encouraged that your daughter is such a loving person.

[Dizzysillyak]

So sorry to hear that you and your daughter are going thru this. The advice you've been given

here is the best I've ever heard. I certainly could've used this when my dd was younger.

I have one idea to add. Some people are visual learners and would understand this

better if there was a book or article they could read. Something that explains your illness, but

doesn't scare her.

Also, My biggest problem raising my daughter was with what others were telling her about me. I was diagnosed with cfs, so She

heard that I was lazy, crazy and useless from several people in her life. My doctors were not helpful at all here. (hmm, She never met my cfs specialist but I'm not sure it would've made a difference with all the negative comments from everyone else).

We're working on

undoing this damage but her negative / condescending attitude towards me is so ingrained that it's a real struggle .. She was only two when I became too sick to function. Now she's 24.

I'm fortunate that she has become health conscious in the last few years so she totally understands

what traditional medicine and my diet did to me. She's feeling better now than she did her whole life, so she really gets it.

Tc .. D

Ps. I hope I didn't fuel your anxiety here. I was just trying to make you aware of how important it is that your dd understands your illness and doesn't allow others prejudices to influence her. You have the advantage of all the info on the internet and I didn't ..

[issie]

I grew up in a household where my sister had anorexia. I was the oldest and felt responsible for my sister and her well being. So. . . .if there is some way to not have them feel like they have to be the responsible one and and just be children . . .that would be the best thing. I do agree that honesty is the best and trying to shield them and pretend things aren't the way they are - is not good either. It is a hard place to be and I don't envy anyone with children that have to try to sort this out. But, they need to stay in their place and not feel like they have to be the caregiver - that's too much for children.

[rubytuesday]

I sense that my 7 1/2 yo GS is having issues with my health changes in just the way that he is seeming a little distanced and always afraid he 'hurts' me if he bumps or elbows me. He lost a g-grandmother when he was around 2 and then a step-g-gfather this past year. He has been with me when I fainted. I just try to reassure him. When I talk to him, I tell him that I saw the doctor for a check up and he told me things are good, or gave me medicine to help it be better (things like that). I don't know if it's smart or not but I don't know how else to handle things, either. I think he may think that I am going to die. We talked about it a little, how everybody dies some day, but how I hope to be around for as long as I can so I can see him graduate school and college and his babies, etc. When he comes over and I'm at doctor's I think he worries that I'm sick (when it's follow-up or something minor). I visited w/ my sister for few days when he came over and I was gone I was afraid he'd think I was in hospital. I couldn't call him as I'd had bad case of laryngitis (still getting over it) and I was afraid if he heard a squeaky whisper he'd think people were trying to hide something--worry that I was really sick. I try to make light of staggering around or having to sit down quickly. He's an old soul, very sensitive.

[songcanary]

I couldn't agree more with Issie. While it is very important to be honest and I'm not discounting that at all, it is a delicate balance to also avoid having the child feel like a caregiver. I grew up the only child of a schizophrenic mom and neglectful dad. My grandmother was a saint who mostly raised me and always told me that my ONLY job was to go to school and do the best I could. Believe me, I witnessed horrors that I wouldn't wish on anyone and it really took its toll on me, especially physically because of the chronic stress. But I am glad that my grandmother told me that because it eased the burden just a little bit and helped me realize that it was OK to have a school life with friends.

My fellow DINET members are very wise. The advice given has been just so wonderful. I am so grateful to be among such great friends!

[corina]

what i forgot to add is that it's very important that although they can help you with small tasks (which makes them feel important) they of course may never ever feel responsible. i want to mention that as i came to the point where i found out that my oldest son thought that me being sick was all his fault. i was so shocked to hear him say that and asked him what made him think that.

we had been in a small skating accident together and it turned out that i needed surgery a year later which gave me full blown pots (though i've had problems all my life). he felt guilty for the accident while of course he wasn't responsible at all.

talking is the key in my opinion, to find out what is going on in those pretty little heads, and honesty of course.

[mwise]

Adding my 2 cents, I agree with everyone here. Keeping the line of communication open is the most important and finding what works best for you and your daughter to discuss what is going on with you. I do know that you may have to have the discussion on-going and reinforce it as needed. I know just this morning, my daughter who is 16 1/2 asked me what I was looking at in the bathroom cause I was bent over leaning toward the floor. I explained I wasn't looking at anything and was bent over cause I was feeling faint and was going to ease myself to the floor to sit. She looked at me strange and just said, "Oh ok." It made me realize I need to sit back down with both my daughters and remind them when they think I am doing something odd, different or strange like bending over and sitting on the floor in the bathroom that it is because of my illness and this is normal for me. I know like most kids, they want a normal mom to do things with them. I admit I hide allot of my symptoms and try real hard to be normal, but than this morning reminded me I am not normal and I need to let them know I am different but yet ok. I also believe letting them know you love them whether a hug, kiss or telling them to have a good day lets them know you are there for them. Hugs & love to you & daughter and everyone here.

[Trach]

My oldest daughter was 12 when my younger daughter started to get migraines. Two years later my younger daughter was diagnosed with POTS. Sometime during that time my symptoms also began to worsen. My older daughter had a very difficult time. She seemed to be exhibiting many of the stages of grieving. Although she was against counseling at first, she agreed to go once. That one appointment turned into several more. Getting a teenager to counseling can be difficult, but if you find the right counselor the relationship can be amazing. The counseling sessions seemed to lift a burden off of my older daughter.

If you do decide to try counseling and your daughter is against the idea, make some kind of deal with her to try counseling once. My youngest went kicking and screaming on the way to her first counseling appointment and walked out all smiles when it was over!

[Sarah4444]

Thank you everyone for all the advice on this thread. I also find it hard to strike a balance between honesty and acting as normal as possible.

Tennille, I'm sorry to hear things are still so awful for you. Did you ever get anywhere looking into MCAS?

[Dizzysillyak]

Great advice everyone .. I sure wish you all had been here when my dd was dealing all of this.

I just wanted to add that we need to be careful what our therapists are telling others in our

lives. Mine ragged on me in front of my dd for not socializing more. Typical psych problem solving

strategy. Despite appearing to understand my illness, she simply had no idea

that it was all I could do to raise my dd.

Tc.. . D

[hilbiligrl]

I meant to thank everyone so much for all the advice on this...... I have actually wrote down all the ideas and im kinda basically using them here and there.... kind of a 'mixed idea' thing..... but, i've always been the person to be alll about brutal honesty, even with my children, especially with my children.

By using all the good advice from each one of you in here, i have been able to take a multifaceted approach..... and using specific ideas for specific issues that arises or that i discuss with my daughter, as well as my son.

Things are going better for her after I sat her down and explained to her that yes, im very sick.... no, i am not going to die..... but i will most likely be sick for the rest of my life, but that I am strong enough to handle it and that I think God has great things in store for me with this disease..... i.e. I am wanting to ask my doc, who is a professor at our local medical school, if i can be a guest speaker about my diseases, etc....... I've let her know, i've got this and she needs to just be a kid, but that i do need their help.

It's working progress...... and I feel so much more relieved after reading all these posts, writing down each suggestion and really 'studying' them and applying them. Such great advice on both ends of the spectrum.

I cannot say thank you enough to each one of you

tennille

[lillybits]

all i have to say is there is a ton of amazing strong people on here! I am sooo stinkin happy and thankful that my husband found this sight for me!

[hilbiligrl]

all i have to say is there is a ton of amazing strong people on here! I am sooo stinkin happy and thankful that my husband found this sight for me!

yes lilly! i've always been so excited about this place..... it took me a long time to find it, thankfully i came across it in oct of 2010 and it's been so relieving since then..... had i not found here, i would not be where i am today...... for so many years of unanswered questions, this place brought me everything under the sun...... it was the difference between living in total darkness (metaphorically speaking in different ways)........ feeling alone for that many years can do it's toll..... but finding here, wow...... i've never felt alone since...... and that is something I will never take for granted and will always be thankful for i love these women and men on here, and am now seeing younger ones pop up on here too

so very nice to meet you on here lilly

tennille

[Libby]

I just want to say, before I get into this, that I TOTALLY understand and sympathize with where you're coming from. I think you've done a great job trying to keep your kids' lives stable. It's so hard to know what, exactly, your kids might need unless you've been through it. I spent pretty much all of my teenage years living with having a sick parent, and the last 3 years fixing the problems that resulted from not really having dealt with it back then. So. It's a subject that I've spent a lot of time thinking about.

My mom was diagnosed with breast cancer when I was 14, and my dad relapsed on alcohol and went to rehab while she was getting chemo and having surgery. On the outside, I dealt with everything amazingly - but really, I was terrified.

Like a lot of others have said, honesty is the best thing you can give her. The less I knew about what was going on, the more I imagined the worst. I didn't ask questions, no one really told me much about it because they didn't want to worry me. Keeping life stable and as 'normal' as possible is important...but teenagers are old enough to know when their lives aren't normal and if you're pretending, chances are they feel like they have to pretend too.

I completely understand why you call your parents or brother and have them help out with the kids, and I don't blame you for it at all. But being sent away when you're at your worst is probably scaring the crap out of her. There are too many bad things that could happen while she's gone. Giving her more information about your illness - so that she knows she's not going to come home and find you dead - will help. Things that might seem obvious (like that you're not going to die), definitely bear repeating.

I can tell you that I wish someone had forced me into counseling back then. I would have fought it - mostly because of the stigma that having a therapist means you're really messed up - but I needed someone to talk to. Someone who wasn't family. I couldn't tell my aunt that a part of me hated my mom for being sick...even though it was true. Even if she would have understood. I needed someone who was completely on MY side, someone I wouldn't worry would look at me like I was a bad daughter if I said something like that. Someone I didn't have to pretend to be okay for.

If you get her a therapist (I really think it'd be a good idea - for your other child too), I wouldn't have it be the same one you're going to. She needs someone that she can feel is there completely for her, not for you - and won't tell you anything she says. That's not to say that having her come to an appointment or two of yours wouldn't be helpful as well, but I really think that having someone who's HERS is important.

I think you're a great mom, with all you've done to make it easier for your kids. I really, really respect that. <3

[songcanary]

Libby,

I must tell you that I totally agree with everything you said. I grew up in a similar situation and because I was the 'normal' one no one ever considered that I might be cracking from the inside. If I had been offered counseling I would have fought it tooth and nail, but I wish someone had insisted on it. Looking back I can see how valuable it would have been. I acted out in many ways that everyone just kept missing.

Thanks for your input.