Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Teenager in pain - need advice from other parents

Wow Stormy, that is excellent information for all parents in the US, with children who might be struggling to get the best education possible while dealing with the challenge of their arthritis. I hope many will feel empowered to help by reading your words.

Bump!

mig

Thanks stormy - we are are having the same battle - I like your comments about struggling physically, emotionally and socially - couldn't have summarised it better - school ONLY see the academic grades and we have had massive pressure as my daughter has been entered 2 years early for her exams and they have set A* targets for her. Far too much pressure, with or without all the pain and fatigue that she is dealing with. Thanks for your input everyone x

Hi;
I haven't been in the parent situation so far, I pray my baby doesn't have to do this crap, but I was the teenager myself, I was undiagnosed for 11 years, in pain, ostracized, etc, so maybe I can give advice from her point of view.

First of all - Please, be on HER side, and make sure she knows you are. As in, don't EVER make her take a med she doesn't want to, or see a doc she's not comfortable with. Listen CAREFULLY to what she says and how she feels about her health - she may bottle a lot up inside, so listen closely, and if you ask her how she feels and she just says "fine" and you can tell she's not, don't make a big deal out of it, but make sure she knows you notice when she's in pain or upset.

Now, in almost-contradiction, don't molly-coddle her too much . . . it'll tick her off something fierce and she might hit you the next time you pull her chair out for her and grab her elbow to "help" her sit down. (I've done this; my mom has a serious desire to do everything for me, including brush my teeth if needed) Teenagehood sucks rocks, it's about becoming independant, and this is gonna be harder for her than most, but she really needs to have her self-respect. If she says back off, she means it.

There's not much you can do about school. I was a top straight-A student, but dropped out my senior year of high school because of my health . . . and no one was there for me. No one. Not parents, doctors, teachers, boyfriend . . . no one. (well, I had a kitten). I was on my own at 17, running a stable, and spent a couple of years alternating between saddle, barn, bed and hospital . . . It was a hard time, but I think I became myself then. School is . . . an institution. Institutions are improving, but in general they don't work for us. We're the round peg trying to fit in square holes. We have to think outside the box a lot to survive. I'm in the US, but I've gotten the impression the UK is much worse than here on that. Here we have a test to get your equivalency of a diploma, the GED . . . do you have something like that over there? A lot of sick kids do that here. One of the worst things about being a cripple is feeling like "normal" is the ONLY option, and since you can't do "Normal" you won't survive. So, any "detours" of normalcy should be considered, if they might make her life better!

Also, make sure she KNOWS you believe that she is truly in pain and it's not all in her head. Without a dx, she NEEDS to know you believe her. She's doubting herself a lot and wondering if she's crazy, or weak.
She's SO much in my prayers,
Bridget

Looking at Bridget's perspective from another angle to reinforce it - I have a 18 yo client with JRA who is in her final year of HS: also a straight 'A' student.

She has a very caring mum (who I knew through mutual contacts before her DD was a client/patient of mine) and we (me as PT) have had this same discussion recently! I have known the girl since she was 12 and in fact set them on the path to a systemic arthritis diagnosis when things didn't add up to being purely mechanical...

This girl always used to say to me how I was the first health professional who believed everything she said about pain fatigue etc and was always sympathetic. She was amazed that I 'got it' and knew she was really a stoic brave kid and not a whiny wimp (she is also quite an emotionally sensitive girl, so I suspect others thought she was a bit of a drama queen.)Only a year or 2 ago did I decide to admit to her *how* or *why* I understood EXACTLY how she felt!

She struggles with the whole 'not having help unless I ask for it' and the supportive but not smothering mother etc. It is a balancing act for sure but I think that what Bridget said is just SOOOOOOOOO spot on. You need to be there for her as a backstop, keep advocating for her and slowly try to hand over autonomy for treatment/health decisions to her as you both feel ready to do this. I know as a mother I would just want to take over and 'manage' the situation, but sometimes the teen may prefer it if you melt slightly into the shadows and let them take a little more charge.

This is a fine balancing act, and one I'm sure that you will have no trouble working out with your teen, and you can be sure that one day she will look back and be thankful for all that maneuvering that Mom did in the background to make things work!

to you and your brave kid!

Oh, BTW - do you and your DD know of the "Spoons Theory" ? This helped me and then this girl enormously. I have recently given a copy of it to another couple of folks who have been silently and stoically pretending to be "normal people"!

Hi.
I specifically created this account because I saw this post. I am an 18 year-old female and I was diagnosed at 14. I understand what your daughter's going through and honestly, it's the hardest thing I've ever done. When I was very little I was a sports fanatic, everything I did was active and fun. At fourteen going from 8th grade to high school, college in England, I was told I couldn't do the things I've always loved. From there I went downhill for a good two to three years. I was so angry at this disease and yet there was nothing for me to take my anger out on. My mom tried to get me to do support groups and such but that didn't work out. I can tell you as far as school goes I had to leave after missing six weeks of my tenth grade year. I ended up feeling very lonely and depressed because of the lack of social interaction. I went through a long period of time doing drugs and being angry. I eventually found my way out of it, but I agree with being on her side. period. These medications and tests are her decision and if she's not ready to accept this disease, wait. Treatment plans are slow anyway, they can wait. I to this day can't take NSDs. And when I tried Enbrel, I could only take it for about two weeks because I'd develop a chest infection. Currently I take nothing for my AS problems. More of an insurance problem than an actual decision but I live with it. I have for almost five years. It's gotten easier, I now know when to expect a flare and how to deal with it. I also have accepted the fact that I'm not going to get better. That's okay now. I'm happily married as well. I think the best thing to remind your daughter will be that she'll make it through the rough patches.

Good luck.

Hi young, and welcome to KA.

I just wanted to thank you for registering so you could speak to NickNack. That's just awesome. I hope you find support here, and knowledge, and that someone here can help you work with the system to get the medical support you need.

Hugs,

Hi NickNack, I've been following this thread, but not being in the UK, and having almost no knowledge of how things work there, have been reticent to respond. But I did want to let you know how great I think you are to be advocating for your daughter in this way. She has a much better chance with you on her side.

Hugs,

Thanks again for all the wise words - I had my 'mums blinkers' on and hadn't really stopped to try and really understand from a teenage point of view - thanks espcially 'Young' and Bridget for chipping in the young persons perspective - I know that I am an over-pushy mum and will try to make sure I channel it correctly and am helpful in the right ways and respect her decisions.
Louise - I googled 'spoons theory' and still have the lump in my throat, I recognise that completely. I just try to be that person who is around to pick up the dropped spoons and wash em off to be used again. Thank you all for sharing xx

Hi, just posting on here to ask again for advice, we still have no 'diagnosis', an mri 6 months ago showed enthesitis and a quick blast of steroids help settle it, but the pain is back and the stiffness never went away at all, we r struggling to get her the right help and support in school without the diagnosis. Am i wrong to want this labelled? I also want to try for DLA (UK benefits) but think that the lack of diagnosis may impeed that process too

Hi Nicknack,
I still donot have a complete diagnosis - I am 61.
But they can give you a diagnosis that covers the arthritis, like s spnody arthritis..
I wish you well. Like Kevin, and many others,I have been i n pain for nearly 50 years. But although clumbsy I have been quite active at times..
I wish you well.