Does anyone have a person in their life who thinks this isn't really an illness, and that your faking the symptoms, etc?
I guess because I don't have a missing leg, or in a wheel chair, or laying in a hospital bed people can't believe that I actually have a problem..
I have always been a fighter my whole life, I don't go to doctors, take medicine when I'm sick, take off work, etc. I push through it, suck it up and keep going.
Chiari is a whole different animal. I'm sure you all know there are time that you CANT push through, you CANT function..
I had someone tell me today at work: I know your having migraines, but that's not an excuse to stop doing what your supposed to.
I said " No this isn't migraines, my skull is too small, and I have 10mm of tonsils being pushed into my spine" "Its not migraines" This is a problem, and I am pushing through as much as I can"
He said " Are you sure you didn't just read all this online, and convinced yourself you have this disease" He said" It just doesn't make sense that you just out of the blue start having all these symptoms"
IGNORANCE IS BLISS..
It's honestly like a huge slap in the face when someone assumes that I'm faking this..
I have several people in my life who don't believe that I'm really sick... I've already had the basic boney decompression surgery and C1 laminectomy... I have the 7 inch long scar up the back of my head from the surgery to show and yet I'm still labeled as a faker, lazy, unmotivated attention getter.
It is really hard for other people to understand... and unless they have it they will never understand... I tell the men who don't believe me that if they want a small taste of the pain I go through every day, I can kick them in the nuts with a steel toed boot. For the ladies who question me, I suggest they get hours long mammograms done.
I know that doesn't exactly help, but when people are quick so say "no thanks" I reply with "At least you have the choice."
Hang tough, you have this group that 100% completely understands what you are going through, we are here for you.
I find that the people who question you the most are the one who would never be able to handle what you go through because they aren't strong enough.
Yes this is an "invisible" illness but it is still an illness....
If this guy questions you again, ask him if he would question a War Veteran who suffers from PTSD if they are faking... that should keep them quiet for a while.
xoxo You are an amazing person, who is strong and compassionate, you are worth more than you know.
Thank you both for the support! After hearing a lot of the stories on here, I think the criticism is probably something that will always happen.. Shake it off and move one.
NieNie thank you for your positive words. Abby is right. You are amazing!
I am so grateful for this site, and everyone on it.
Keep fighting the good fight! Chiari is real, it is a physical illness (regardless of what others think) and it has physical, mental and emotional side effects. We are amazing people for continuing to fight against the stigma and for continuing to support fellow chiarians with life.
I did the same. Went a long time without telling anyone, or explaining, but now that the symptoms have gotten this bad I haven't had any choice but to explain, which has almost made it worse because now there looking at me going "Why is it just now this bad"..
I have no idea .. Some days are fine, and others I want to die.. I don't know why this is happening.
Honestly though most everyone here supports me 100%. That particular person just has no compassion.
REBECCA: So do you still work full time? If so, how is that working for you? Do you miss alot of days, etc?
I have been wanting to talk to someone who has experience with working and dealing with symptoms.. My career has been my life, and as of now none of it looks positive.. It takes everything I have to get through the day, and I am scared it will be so bad that I can't anymore.
Like you I work in a supervisory position, so I have quite a bit of flexibility, but my work load is horrendous and my job has a high-paced, high stress level. So while I am here there are no quiet moments, or monotonous tasks, but I have been here since I was 18, so all of these people are just like family. I actually spoke to a boss today, and I am interviewing someone tomorrow to take over my position so my work load isn't so much, I think this will help quite a bit. I will be able to relax a little, in about 6 months once the person is trained.
Your tonsil story is actually quite funny.. Because for a while when I was first diagnosed I kept thinking.. " I know they don't do brain surgery when they remove kids tonsils"
OMG OMG OMG im having one of those days to !!!! Im soooooooo f&%$#@n sick of hearing well you don't look sick.I haven't brushed my teeth or hair for 3 days,Im seriously thinking of taking the sissors and cutting my hair OFF just so I don't have to brush it.Or maybe ill go GI Jane and just shave it all off....My mother actually said to me this morning that I should think about seeing a shrink because I seem so depressed and I don't get out and enjoy life anymore.WTF is wrong with people.I swear its not the illness that's killing me its dealing with my family that has absolutely no compassion.It makes me sick.Whew now I feel better.I don't know how you guys get up and go to work everyday,your truly my heros!!!!!! xoxoxo
I am getting there.. Don't have much more tolerance for BS.. I wonder if we could contact Wikipedia and tell them that this is a new symptom that we Chiarians are all experiencing.. :-) and ask them if they would add that to their list.
Nykki said:
I just don't have the patience or the tact for BS anymore, thanks to chiari. It has slowly drained the once bubbly girl I used to be. That coworker would have got punched in the throat and I would have got written up. Which is probably why I don't work anymore. I was always getting sick at work and having to leave. I would to go to the doctor and they would tell me to take a week off. I would go back to work and start hurting all over again.. I wish that I could have remained in the workforce so I could have built up enough credits to get SSDI, but I was in too much pain. So now I have applied for SSI instead.
Today is a bad day for me also just have been in constant pain!!!! it is so frustrating! I do have several people who thinks i'm faking an illness but I would have to be out of my mind to fake having all this pain!!!
Rosemommy, I’m glad you established to your coworker that he is a dumbass. Thanks for the drive-by diagnosis doc., could have saved thousands in consultations! He gets the paper plate award for sh**-bird of the year.
People who have never been through a life altering health crisis are the ones who judge. Know that you are absolutely right when you say ignorance is bliss.
Dingaling…sorry for you too. Coming from mom is extra painful we know what we all go through, and we know when we actually complain it’s BAD. We know what you are made of… Amazing is right. This condition makes us more understanding and kind toward one another, and others with disabilities, though- that is a positive.
Hi, Yes to the fact that I have some who think that I have made this all up. Despite the fact that I have had different symptoms my whole life. Nothing in the early days added up to anything disastrous, but about 2 years ago it all came together. In fact it is my mother and father. They think it is all in my mind. Little do they know!! The reaction is devastating. I only have my immediate family......husband and children.....who acknowledge what I have been through. However, this website has been good and I am trying to put all negative people out of my thinking right now. Only good thoughts and prayers permitted. How are you coping with it?
Desron: I am coping okay with it. I have my melt down moments, when it all just feels hopeless but luckily those moments don't last long. I think the hardest thing for me is; I was raised in a way that if you we're hurt, or sick. You suck it up, and get over it. (not the best parenting strategy) With that said its not often that I will complain, or tell someone about whats going on. So it's really just a huge slap in the face when I finally say something, and I get slapped in the face and basically told I'm a liar. For the ones that know WHO I am, they understand that I wouldn't say anything unless it was un-tolerable pain.
So I don't plan on letting those negative things get to me.
They are ignorant to whats really going on, and I'll leave it that way.
But as you all know it is devastating to find out something is physically wrong with you, and its especially hard to come to terms with the fact that it may always be this way.
Thanks for the reply. Yes! Coming to terms with the fact that I may have to live with some level of pain is difficult. I also was raised to suck it up; therefore, the pain has to be pretty bad. My husband gets annoyed because pain is a sign and the doctors should know. Right now, after my second surgery, my neck muscles are the problem. They hurt beyond belief at times. I have tried heat, Tylenol etc. but nothing seems to deal with it. I am with you I keep the ones who understand me close.
Hello, this resource might be useful in explaining to others what life with chronic pain can be like. I hope things are going better at work for you. Gentle hugs.
we know what we all go through, and we know when we actually complain it’s BAD. We know what you are made of… Amazing is right. This condition makes us more understanding and kind toward one another, and others with disabilities, though- that is a positive.