Tired of People not Understanding

I'm tired of blogging and complaining, but gosh, I am so tired of people not understanding. Now, in their defense, Ehlers-Danlos Syndrome is not the easiest thing to understand. But why when information is available, or when I've even given it do they still not believe??? Or understand? Or question what the experts say?

Yesterday Bug came home from school around 1:30. I got the call around 1 that she had been complaining all morning about her stomach and head hurting. She spent most of the morning in her bean bag chair. However, at lunch recess the teacher saw her running around playing like nothing was wrong. When recess was over, she came inside and started complaining again and was sent to the office to get her temp taken and rest.

Her temp was normal, and they had her rest for about 20 minutes and then called me not knowing what to do. I said keep her another 15, and I'll call back. So I waited 15 minutes and then went to the school to check-in. Bug was still in the office, laying on the cot. She was not on the camping pad the OT left for her at the beginning of the year, nor did she have her pillow which I had left for her at the same time. The agreement at the beginning of the year was that she could use these things when she didn't feel well because we had a theory that it wasn't just rest that helped, but rest in a comfortable spot. In their defense, the office lady was at lunch and the person in there likely didn't know, and with a tummy ache I doubt they would have thought comfortable rest would have helped anyway....

So, I talked to Bug and it was the classic "all over" tummy ache we always get, so I just took her home. She spent the next 3 hours resting on the couch, snacking some (something she often does when her tummy hurts) and not even talking. As more time went by, she started perking up some and by bedtime she was "normal again."

In the meantime her GI had called me regarding the e-mail follow-up I had sent a week ago. He told me he wants us to try dairy-free for 3-5 days and see if that stops some of this. I went through her symptoms again with him (the fact that this goes in spurts, and once it starts we have a rough week or two and then we're good again, and that it isn't all day, but part of the day, etc). He said once again that is normal with the GERD. We're going dairy-free to see if it changes anything just in case she has some IBS going on too. We don't think so, but at this point it doesn't hurt to try. (another reason I love him - he's not just pushing surgery, he's trying any and everything with us!) If that doesn't work we're upping her fiber for a week to see if that works. Then we check-in again with him to see if he has any new ideas before our visit in April.

Anyway... Today I stopped in Bug's room to tell her teacher no milk, and she mentions yesterday and how maybe it was anxiety or something. She just couldn't understand why Bug would go and play at recess when she was so ill. I didn't know what to say, except 1) she's a kid, and she doesn't get to play much 2) the pain comes and goes and 3) if it is being made worse by milk, she had just eaten milk right before school and then again at lunch. Which means it could have been flaring up because of that. Regardless, I just felt like she didn't much believe it was "real" - even mentioning that another girl was doing something similar that day. Well - I LOVE her teacher - she is the best! But it is real - we dealt with this last year at school a lot, we deal with it at home, and the tests from the Dr's show it. (the GERD) Why do people assume that because she doesn't complain and you can't see it she isn't ill????????? We all work so hard to make her feel "normal", and to teach her to be in charge of her own body and we encourage her to meet her own needs. Why is the immediate assumption that she is faking not feeling well - or that on a daily basis I am the one making up these problems because she isn't talking about them 24/7???

Should I be teaching her to complain non-stop and feel sorry for herself? I think not! But it seems that in order for everyone to "get it" that's what needs to happen. Of course, if she complained all of the time then she'd be the girl who cried wolf. No matter what, she gets the short end of the stick. Ugh.

I want her to feel good about her self and not harp on her body not feeling well. The fact of the matter is for her she often won't feel "normal". I don't want her to focus on that. I want her to focus on living and being a kid as much as possible. Not on her aches and pains. Yes, I need to know about them, but I like how we've got it worked out where she lets me know in a matter-of-fact way and the end of the night. We don't have long talks about it (unless something new crops up, or it is unusual or bad pain) it's just something she lets me know about. No different than a homework assignment or what she played at recess. The problem is that doing it that way does not allow the people in her daily life to hear her express these things from her, they only hear it from me. And for some reason, I'm not believable. I guess that makes the Dr's unbelievable as well, since the tests and notes backing it all up come from them.

Why people seem to think that I could go to all of the trouble to find these Dr's who are good enough to work at the University of Iowa but are dumb enough to be manipulated by a Mom who for some crazy reason wants to waste hours of time and worry on a kid people don't believe it sick gets to me. I would give almost anything to not have to do this. Do they have any idea what it is like to always be looking for the missing link between these problems we have? To have to have the stress of all of the medical appointments, the driving, the missing school, the inability to work out of the home if I wanted because I have this other stuff going on... Why would I want to worry about what sports or activities are safe for my child to play if I didn't have to? Why would I want to forbid her from things that every other child gets to do? Or worry about if she can go to someone's house because the parent knows what is and isn't safe for her to do - or how to administer her medications on time. You couldn't PAY ME ENOUGH to create a crazy-ass life like this for my daughter or myself. Period. And I am sick and tired of people not getting it, not understanding, not making efforts to educate themselves to better understand and just ASSUMING I like to do this to us.

Yes, I am angry. I am angry that not only does my daughter have to be different but that we have to fight for people to believe her. She hasn't done a damn thing to deserve that. She is sweet, kind, honest, and a heck of a trooper. If she says she feels like crap at school someone better believe her - because she feels like crap most days and doesn't say anything because that's the way her life is. That's bad enough - it just kills me that then people choose to not believe her when she actually does say something.

I love our school. I love her teachers. I love my friends, and our AEA. What I hate is that Ehlers-Danlos Syndrome is not only invisible, but it brings on even more invisible symptoms that people can't see. And our society in general doesn't believe what they can't see. Who cares what the medical Dr's say, or what the Mom says. If we can't see it, we don't believe it. Since when is that how we live our lives???????????????????

In some ways I am lucky- at least I'm not being accused of child abuse. Here's an article that was just written a few days ago about an Ehlers-Danlos Mom who had that happen. It's long, but worth the read.

Maternal Care- Or Harm?

Ok, I'm done complaining, at least for now. I know I've brought this all up before, but I had to do it again. It's not one person I'm upset with, it's society as a whole. I believe my daughter is loved and cared about at school even if they don't get it. I might not have that somewhere else. For that, I am thankful. I just wish I could make people more aware of EDS and how horrible it can be, and that we are not crazy!!!!!!!!!!!!!!


Anonymous said...

Might I just say you rock! I have EDS also and am a high schooler, my teachers don't really get why some days I just don't want to participate. There need to be more people in the world like you who stick up for people like Bug. Even when you get older it's still nice to have an advocate, don't give up you'll get through to them eventually. For me it took asking a teacher to help me put my dislocated shoulder back in, but let's hope you don't have to do that. Thanks for the amazing blog.

Anonymous said...

I have Ehlers-danlos syndrome, and I wasn't diagnosed until I was 14. For years I complained about injuries that didn't show up on x-rays, sprains, twists, and overall pain. Everyone thought I was faking it, including my parents. I was forced into all the different sports at school, and one of my worst phys-ed experiences was line-dancing. I sprained both of my ankles within 10 seconds. The fact that you know what is going on, and you have a name to throw at all the injuries and pain other than hypochondria is comforting. You know at least some of the risk factors that go along with EDS, and your daughter has someone to talk to that will believe her, and not make her feel like she's 2 years old. When I was finally diagnosed with EDS, all my teachers got the same little 4 pages of information I ound on the internet to go along with my doctor's note... One of tem even had the grace to look embarassed about sending me to the office when I said I was in too much pain to participate. If Bug doesn't complain about everything, people don't understand that the pain is 24/7 and that some days, or hours are more bearable. I did complain all the time, and all it didn't get me anywhere. People didn't like to be around me because I was always complaining, and there never seemed to be anything hysically wrong... Now I'm waiting for shoulder and knee surgery, and people are finally understanding that I don't complain nearly as much as I could, so when I do complain, peple start listening.
I think one of the biggest issues you're having with Bug is her age, she's just too young for "grown-ups" to take her seriously.

BugsMom said...

You know, I think you are right! Bug's age does have a lot to do with it. I hadn't thought of that before, but most kids are not in tune with their bodies like she is. Of course, most don't have the pain issues either.

I wish you the best of luck with your surgery!!!!

BugsMom said...

Hi Dori!

Thank you for dropping me a note - it's feedback from other "young" people that really make me feel good about what I'm doing. Not only because it reinforces what I've learned, but because it gives me hope to see so many intelligent and motivated young EDS'ers out there! How many students are googling health issues and interested in taking care of their bodies at such a young age? It's inspiring!!!

I wish you the best - thank you for dropping by!

Anonymous said...

hi i have ehlers-danlos syndrome .and people think that i look the picture of health but as ive got older the pain in my joints have got worse and i get tired quickly and also my muscles go into a spasm .i was diognosed with this when i was a small child and every day is a task .
its so nice to see that other people know how i feel.jean