people not understanding....

[Sexybare]

i am really frusterated about family not understanding what im goin through. ok they do not have chiari so they dont know but they can at least try to get that hey look she dont feel good so i will leave her alone. my oldest son is 15 and he looks out for me and tries his best to get it. god love him, hes such a good kid. my youngest is 13 and totally self centered. im trying to change that but its not easy lol. i dont want him going through life thinking about himself only. my dad today asked me what was wrong and i told him ive had a horrible headache for 2 days now and its making me nauseous. he said he dont know how i feel cause he dont have what i do, so hes halfway there. my mom understands the most because she has been with me to drs and through my journey. my fiance wants to fix me and feels bad but still doesnt get it. when i dont feel well and need to rest he will text me from work all day, really urkes me. my brother dont have no clue what im dealing with so everytime he has his daughter he wants to bring her over swimming which is fine with me but i told him today that i wont be out there because i havent been feeling good. he probly thinks im just lazy or i dont want to see my niece. i love spending time with family but if i dont feel well, theres nothing i can do about it. im just so tired of people not understanding. i have a chronic illness, sometimes i just need to be left alone. and if i dont cook dinner than we eat fast food, thats really gettin on my nerves also. my fiance is in for a rude awakening after my surgery. hes gonna be doin everything around here,lol. sorry just needed to vent a little to my chiarian family who really only understands. UGH

[Sexybare]

That's exactly what I do. Put on a smile even thi I know I'm gonna pay for it. It helps to take mind off chiari some but after I feel worse.

[Isabel305]

I am so sorry. This forum really is a blessing and the best form of therapy. My fiance has chiari and despite the pain he is in, he always tries to put on a smile for everyone. It leads to people to REALLY not understand what he is going through. They don't appreciate how strong and wonderful he is to be making the effort to smile and be active, despite the fact that doing those things makes him feel so much worse. It kills me. I want to grab these people and shake them. I want to sit them down and explain every detail and MAKE them get it. Unfortunately, it doesn't work that way, but sometimes you just NEED people to understand. That's why this forum is the best place to go. xoxo

[cash242]

Hey there! My friend I just dealt with the same thing from my brother yesterday because I never call him and am antisocial...true I used to be the strength for our family until I became ill which want until I was pregnant with my 2nd child...36 years symptom free and bam! That had been hard for people to get...i sm much better know but really hate being with people...think the pain had led me to depression they say go see someone but pain causes depression and anxiety I need to get rid of pain..i think you should stay with your parents when you get home and let the boys fend for themselves. Hang in there you are getting close!

[Sexybare]

Hi hope you are well today. Wehave been having crazy weathe here. Sunny, rain, sunny, rain for a few days. I've had bad headache. How about your weather?! That's michigan tho. I read conquer chiari hun. Its grrrreat.

[linnielou232]

When I was approached to going and seeing a therapist I quickly responed by saying ". I don't need to talk to anyone".  and then explained this community to them and they agreed with me.  No one out there can understand our sisuations except for us who live it.  I'm thankful my family does get it.  I don't even have to say anything and they can tell I'm having a bad day by just looking into my eyes.  They say a lot LOL.....I feel for you right now is focusing on your next surgery day.  I know you mentioned to me that you read the book control under pressure.  Maybe your Fiance could try to read this and give him more understanding.  I'm reading one now called Conquer Chairi and even I have learned a lot from this book.  It has a lot of fact in it and it is sad to read there isn't a lot of Dr's out there that understand Chairi, but talking to my NS yesterday it does help to know this is being taught in more medical schools so hopefully in the future there will be better answers out there for us all.  The facts that are in this book is amazingly sad because they are just doing studies and trying to understand it all.  The one fact which didn't surprise me is that more than 60 o/o of women mostly are dx'd with anxiety and depression and are sent out into the world with more confusion than when they went in.  Hope your having better more understanding days.  Wish you the best.
Linda :)

[irislita]

dana...we all know what u r talking about...and the fact people not getting it is the hardest part for me...if friends tell me hey lets go dancing just for one hour and I tell them I just caaaaant...and then this question dont u think its just all in ur head...I dont even answer the question to people anymore...If they want to play psych than they should all start with their own life and behaviour!!!! the problem of our condition is that its not visible and I doubt people can imagine the pain we are going thru...really!!!! I think u should concentrate on ur surgery now...heal and then take the step to see a psych...step by step dana!!!! I am glad that disability approval looks good for u .-)) hugs and love

[MamboMom]

It's so hard to try to get people to understand something they haven't experienced firsthand.  I really hope you can catch a break soon, and you always have us!  Good luck on your upcoming surgery, too :-)

[Sexybare]

I want to see a psych but I have a big problem holding appts due to my chiari. I tried speaking to one about 7 or 8 years ago when the dr kept telling me I was just depressed and javing panic attacks. Which in fact wasn't the case. They tried diggin up dirt from my childhood, which I don't really have any. It was really annoying. Lol. But I will consider it. Lawyer says its lokks good for disability also. But I'm having surgery aug 20th(second surgery) so I don't know exactly when id have time to go right now?! Thank you amd its nice to meet you.....Dana

[ellijaygal]

Unseen illness can be very frustrating. I worry about you more than them.

First of all have you done enough research to make an informed decision about surgery and also, you may want to find someone to speak to (a social wrker, psychologist, or psych) to figure out how to deal with other people's attitude toward you and your illness.

I use to get so angry at people for not understanding, not helping, and all the things you mentioned. After talking to someone I realized that I was the problem. I still had guilt because I was not able to live up to everyone's expectations. Once you take care f you the opinions of others doesn't seem to bother you as much. Or that was the case with me.

[heatonkn]

I completely understand. I was a teenager when my problems started. I was more moody than most hormonal teenagers were. My relationships with my family and friends suffered. I was diagnosed with depression and social anxiety when my mother took me to a doctor because I wouldn't want to leave my room and the fact I would hear such high pitched noises. Plus every sound was magnified a thousand times so I would stay away from people, tv, and a radio. After the severe neck pain is when I went to a neurologist for an MRI where they found my Chiari. Thank God because my medications for the depression/anxiety was making me a careless zombie.

[selmaS]

  I know just how u feel, yrs b4 I got my Dx my MIL actually called me anti social for the way I would pull back and sit away from all the noise...and activity of family gatherings etc,....

Yes, it use to bother me more then , and on occasion  it still does, but not like b4....

As I always say we can not expect family and friends to understand this condition when there r soooo many Drs even NS's  that do not...

Yes, we want them to try, and listen to what  we r saying, but we can not expect more of them then we got from one of the worst Drs we saw.

It all takes time...and with time they will come around.

((hugs ))