You would think...

[Hollydoll85]

that since my mom literally LOST her bladder (due to medical malpractice during a silver nitrate treatment for an unknown bladder disorder that we in retrospect think might have been undiagnosed IC) she would be a bit more understanding about the pain I go through. After her injury, there were years when nearly all she could do was lay on the couch. I am thankful that I haven't lost my bladder (although I must admit that some days, I want to rip it out myself), but I still have a considerable amount of pain. I honestly think she doesn't realize what I'm going through. No matter what I do, who she talks to, what she reads, she thinks I'm too young to be going through this. You know what? I am too young, but guess what? It's still my reality. What do you do to help your family understand you?

[sleepyangel30]

Young people can become ill too, Nobody is to young to suffer. I pray that your mom will come around.

[ICNDonna]

I think your mother probably knows, but just doesn't want to accept that her little girl is going through what she once did. One day soon, I'm sure she will come around.

Donna

[Imustpee]

She is wrong! My I.C. started in 1966 when I was 6 years old and in Kindergarden...altho this is not typical it does happen..I.C. has no age limit.

[Ginny]

If I come across any articles about IC affecting teenagers I will forward them to you.
I also think Donna is right. It is so hard for a mother to accept that her child is ill.

Ginny

[csocain]

Praying for you and your mom. Blessings to you both.

[Sarojini]

I am pretty sure my IC began when I was 8 or 9 -- "too young" according to many, but definitely possible!!!

My mother was not understanding at first, but has been coming around more lately. It has helped that my father was just diagnosed with fibromyalgia, which I've been trying to explain to them for a while now (and now we have a weak genetic link). Anyway, now my mom remembers my having trouble with frequent, urgent urination as early as 8 or 9, and at first she was very unwilling to believe it -- I think she was frightened and upset that she had not done more back then for me, so that perhaps now my IC might not be so bad.

Like Donna says, your mom probably knows too... she just doesn't want to admit her baby is sick too just yet. Give her a little time, and occasionally give her printouts of articles or posts from other teens who have IC. Slowly, I bet she will come around.

Lots of :grouphugs: until then!!!!!!

[Sherry5]

Or she doesn't want you to be getting attention that she thinks should still belong to her. I know that sounds really horrible, but moms are only human too.

She could have a compassion problem. My mother did, and my whole family still does. I struggle with it myself. I have to force myself to be compassionate at times, when it is difficult for me to understand the problem.

Hopefully it won't take getting your bladder removed for her to come around. :)

[megancolleen]

My mom sometimes says, "You're too young to be in so much pain" or "You should be out having fun and living it up". I know that she is just expressing her frustration that I have to go through this...she doesn't think it's fair that a person my age has to be in pain all the time. She's not condemning me for being young and in pain, which is how I guess it might sound. Perhaps this is how your mom feels too? Sometimes the things parents say don't come out quite right, but they mean well.

Of course, if she is actually denying the possibility that you could have IC at your age, that's a different story...

In any case, I'm sorry you're having issues with your mother. I know how important it is to have family to support you compassionately when you're hurting. I hope you're able to talk through it. :grouphug:

[kdfurgi]

although my "unbeleiving" family are my in-laws, i understand competely. i started having symptoms when i was 6 years old and came out of surgery from having my tonsils removed. i had problems with frequency/urgency long before that and wet my bed(embarassing) until i was 4 or 5 because i would sleep through having to go the bathroom for the umpteenth time at night (mom put im in the small room with a door to the bathroom, right after i learned, lol) and would wake up and have to go get my mom so i could take a shower while she remade my bed and put a new waterproof pad on the matress. my mom in law was talking to me about a month ago before i had my first hydro/cysto/biopsy and she was telling me that she had done research and talked to some drs (did i mention she is an RN and presently workS in postpartum?) she informed me that i am to young at 22 to have this disease and the fact that i have had symptoms for so long that it must be something else and that it was all in my head that the meds the docs were giving me really worked and the surgery would prove it. i told her if it did and it was all in my head that she would be the first person out of the hospital to hear about it and that after that i would no longer complain....needless to say, the hydro showed that the meds were really working and that i really am not to young to have IC, lol. she was still the first person my husband called when the dr talked to him when i came out of surgery and he told her that i do have the disease and asked how the kids were. she later appoligized and said she didnt know what had gotten in to her. but she and his 2 sisters are the only ones that have said anything to me about understanding and not tried to force me to eat something that i cant have. anyway i just wanted to let you know that even the so called "docs and nurses" that seem to "know everything" about this disease dont really understand and know everything about it unless they have had it, or may be if they are real good possibly some of the ones that help to treat it.... :grouphug: :grouphug: :grouphug:

good luck and hope all gets better,
kari

[green_the_fish]

Oh jeez, I hate it when people say stuff like that!
I'm 16 years old, and I've been diagnosed with IC. Some of the things that people say bug me...

What? You're too young to be sick like that! Sometimes young girls that are pretty and smart like you just get too sensetive and worry about themselves too much. You should get out and exercise, and stop making a fuss... blah... blah... blah...

Yeah, I've heard all kinds of stuff like that. The sad thing is, sometimes the people that say it are actually trying to be nice. They just don't understand about IC.

What bothers me is when people say flat-out that I'm a psycho-somatizer :mad:

Story time:
My mother divorced my father when I was little. He wasn't a very responsible person, and he still isn't. Back when I was in middle school, he moved away to another country. We lost contact after that, since I felt apathetic towards him in general. We sent perhaps one letter a year to each other, and that was it.
Recently, I was admitted into a psych ward for severe insomnia. The underlying cause turned out to be bipolar one, also known as manic-depression. I was, and still am, in the "up" phase.
Now, when my mother told my father, he flipped right out. He sent a big e-mail to my mom which said that I was a psycho-somatizer! It made me very upset and I cried. When I composed myself, I sent him a copy of my cysto+hydro. He just ignored it and kept on sending e-mails to my mom, trying to convince her that I was acting out the whole IC thing, and threatening to come back to the US to get custody of me, so that he could get me to cut the crap. Well, I sent him an e-mail a few days ago telling him that if he is not permitted to say negative things about my character based on the fact that I have a chronic illness. If he continued to say such things, I would break all contact with him, and possibly get a restraining order.

What's my point? Don't take that! I didn't. Set your foot down when it comes to your mother making negative comments about your illness. Tell her that it makes you very uncomfortable. If you must, then make the topic of your IC off-limits. Make a deal with your mother that you won't mention it of she won't. You can always come here and talk to us about that.

Anyway, I really know how you feel! It's a tough situation, but you have to stand up for yourself. I get the feeling that your mom really cares about you, and she's having a hard time accepting your illness. It's probably because she knows so well what the pain feels like, that she would never want it inflicted on you. Perhaps she even feels guilty that she may have somehow passed on these bladder problems to you. But if what she's saying is hurting you, you have to put a stop to it. It's part of having self-respect.

[hoping4acure]

very well put green the fish. You are well beyond your years. I have read a lot of your post and I am just amazed. ;)

My family never did, and never will understand IC. The only one that does understand me is my 25 year old niece (how the hell she came out of sister...is a mystery to me!)

Like someone on this board suggested to me...print these threads out and show them.


good luck.


:grouphug:

Louann

[TabbiH]

Sometimes it's the ones who have problems that don't understand. My parents have been terrific, my husband sometimes (even though he's a paramedic and should have some insight into health issures- he just want to know when I'll feel like having sex), and my mother-in-law (the diabetic with fibromyalgia who claims that her high blood sugar is "normal for her" and so she doesn't need insulin) sent over a meatball sub with tomato sauce after my hydro so I wouldn't have to cook dinner! In all fairness, she does know that I used to love them from this particular restaurant, but she had also asked for a list of things I couldn't eat.