How many others face scrutiny/horrible opinions from loved ones?

[Emme80]

i was wondering others experience with people's reaction from loved ones or how said loved ones have said hurtful things as you face this condition (and other conditions that you unfortunately may have)
I ask this because my brother has been relentless with his horrible words-even on Thanksgiving this year- (I do my best to avoid him due to this). He, like anybody who knows me, knows I've  been struggling w/feeling ill & very NOT right over the years (before all the obvious Chisri symptoms reared its head, screaming at me)  I have generally felt unwell for way too long. Fevers almost daily, nausea daily (severe mornings usually), headaches, "frozen/"stuck" for hours at times due to shooting electric pains from base of skull to top of head, my blood work always showed very high white cell count (had to have LP's done)...just SO many things. Even still, I'm struggling (another reason my brother is actually NOT talking to my mother...b/c he says "see? The surgery didn't fix her...yet even in the 1st place, he knows nothing about Chiari & nor does he want to. He said he knows cancer patients who live better lives than I do. He (as of Thanksgiving dinner...I left crying) says that what I have is Munchausens. He tells my mom I've just "bulls******" her, I've pulled one over on her for years. (My blood pressure as of Thursday was 155/100...pulse 117). My thyroid (turned into a goiter years ago was emergency type surgery-turns out is had Hashimato's...again-he said "that surgery didn't fix her". I had an incarcerated hernia 4mo. before the Chiari Surgery...he laughed about that(he said I was just looking for a reason to have surgery- b/c of the incarcerated hernia). Now, he keeps saying the "Munchausens" word. It's soooo hurtful. He's now got my 9yr. old nephew in on the "Munchausens" word, as he(my nephew)  asked me if that's what's wrong w/me. Needless to say, I feel like I'M the reason (at the base of it) that my mother doesn't have a relationship w/her son (I know, that's HIS decision...I just wish he'd go ahead and hate me vs. take it out on her) He's said he acts like he doesn't have a sister b/c I'm embarrassing to him. I know that they symptoms of Chiari are not visible when you simply look at me...but it is very real (unless you watch me when vertigo attacks/I'm stumbling to walk/fall)
I'm just wondering what experiences others have had when dealing w/this condition (and one i soooooo wish was not a reality in my life). It's hard enough dealing with this condition, the surgery and what you're dealt w/after the surgery (as I said, on Thanksgiving, he apparently felt the need to bring it up- yelling that it was "Munchausens"!!!! ). The only reason I have to see him is b/c of my nephew...sometimes (5days a week actually) he needs me to watch him after school,as he needs someone to watch him until he  (my brother) gets off work. If it weeny for my nephew, I'd gladly never see my brother. Even if I didn't, he's relentless talking to everybody else in the family about my "Munchausens".
I'm curious, with Chiari being such a difficult condition, w/so many symptoms that DO seem strange to link together (to an person w/so little knowledge & does NOT want to know about it), it being a difficult to the eye condition, have many of you experienced such....heartbreaking words an attitude from loved ones?
I know it's easy to just "don't listen to him"... But He constantly finds ways of letting me know his "view".. and unfairly, keeping these words alive by telling other people-family, friends...basically everybody I may know that he knows...and some (my sister in laws family, whom I do have to see on my nephews b.day, etc) that I DON'T know. He said he asked at the cancer research center (he filed paperwork there) if such a thing could cause so many problems & apparently their "answer" of "No!" says everything he ever needed to hear.
With Chiari, we have a difficult enough time not feeling crazy, so when a "loved one" says these things all of the time, it's very difficult. What are your experiences w/this kind of thought, words & attitude towards your condition. It's ruined my family unit.
Thx. for any experiences you share& I'm so sorry if this kind of thing (it's near the fine line of abusive, w/my brother) has happened to you!
I hope you all are having a rested, ease of symptoms day!!!
<3

[Blueghost]

Its not my place to comment on other's family, but if my situation was the same as your. I would tell my brother to go jump in a lake.

[selmaS]

  I know it may not be in this thread but I have said that I feel our parents reluctance to face this condition face on may have to do with feeling guilty....not sure why...but they could not have prevented it in any thing we have learned so far on this condition....but they are our parents and I know my dad feels guilty and wants to keep his head in the sand.....does not want to know for sure if it is from his side of the  family....

Fear, guilt, and  helpless are the top things our family and friends deal with and then the not understanding just what is going on,

[shelly0513]

Unfortunately I understand all to well this feeling. My own parents prefer to ignore that I have an extensive medical history. My own mother was in denial about the Chiari malformation complications right up until surgery. She frowns upon my openness and honestly about my medical history at work.

[Shannsam]

It is very hard for someone who doesn't have chiari to understand what we feel like.  I had symptoms for years and thought I was just depressed as I slept a whole lot.  I had a very hard time keeping up with the household chores and taking care of my children so I chose the children over everything else.  I've been told I am a slob, a disgrace, etc.  Even now that I had my diagnosis and surgery last year there isn't very much understanding.  My surgery left me with a lot of numbness/tingling.  My feet, legs, belly, back, right hand and arm.  So  I still am not up to par. But thankfully, my husband and children are very supportive and we try our best to ignore the comments of family.  Just hand in there and try not to worry what others think of you.  You know what you are feeling.  Don't doubt or second guess yourself based on their opinions.  Wishing you the best...

[KerriC1]

ditto what the other posters said. I've not had anything as awful as what you've experienced, but I will add that my own mom is less than sympathetic. Although she loves and cares for me, she has never researched chiari or wanted to hear details of the symptoms that plague me. Sometimes when I'd complain she would say I have a headache today too.... She was with me when I had my surgery, and was wonderful but I felt as though it was more for the "my daughter had brain surgery" aspect of it. Thank goodness for my husband, children, and sister!

Try to keep yourself positive as much as possible. Easier said than done I know.

Much love

[gjjl]

I must say being treated like that is absolutely horrible and definitely heartbreaking. I'm so sorry you're enduring such behavior.  I don't know if I could with stand that. If you're having to see him 5 days a week to watch your nephew he needs to atleast be respectful. If you are all these things that are horrible and embarrassing to him then why does he allow you watch his child?? Sounds like deep down he has issues with himself that he takes out on you. If I felt a horrible way about a person I would put the life of my child in that persons hands. I am so deeply sorry for what you're going through. Try to distant yourself from negative people as much as possible. Find those who will lift your spirit not drag it down. As far as his relationship with your mother that is not something that you need to blame yourself for. You didnt ask to be sick and your mom is just standing up for her child which is her choice and a good one. Prayers for better days ahead

[gjjl]

Would not put the life of my child....sorry left out not

[adventurer53]

I too am so sorry for what you have had to endure!! Some families are understanding and others are better at a distance. Is there anybody who you can be with on a regular basis who is understanding and perhaps deals with a similar chronic debilitating illness? I've been adopted by our cancer support group and its so wonderful! Been with them for more than ten years.just a thought.
Praying for days of less pain and someone to lighten your load.
Adventurer

[Emme80]

Indeed, it does hurt just the same. I asked my mother to not tell my brother of this surgery-I didn't want to hear what he had to say. But, she felt it was important for him to know(unbeknownst to me that she said this until night before my surgery) and she wanted someone to be with her there during the surgery. He said he would not go- he said it was a joke & that he didn't care what happened to me.
I try to tell myself that it doesn't matter what he says or thinks, but there are some words that you can never get over: like "at least try" which your sister said after your surgery. It's sad. We feel crazy enough, getting through this Chiari maze.
Frustrating it is already & then to be called a joke & said its Munchausens....it's a knife in my already hurting heart(and brick lol). I do wish that instead of taking it out on my mother (b/c she's stood by me during all this) that he'd just hate me more & not punish her.

[selmaS]

  I am so sorry you are having such a difficult time...but it is not uncommon for family, loved ones and friends to turn on us in this manor....main reason is fear....they can  not help us....as they do  not understand it...never heard of it....so it can be easier to ignore or ridicule....for relatives they fear that maybe they too might have it and do not want to even consider it so the more they make fun of it or ignore those with it maybe it will go away....???

I know there are some older threads on this topic....but I know from my own experience that I have to accept who will listen and who will not....I do not talk about Chiari and my related conditions bcuz my sister went to college while I did not...so she knows more then me and lets me know by putting me in my place....and right after my surgery I could not open water bottles...the strain of trying was too much plus I had no upper body strength,,,,I asked her to open it for me, her reply was only after I see you  at least try.....sigh..a knife in my heart....I know it is not the same as being accused of Munchausens but it hurts just the same.