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Why Are People So Ignorant?


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I am just so irked! I wrote on a discussion board about how hard it is waiting for disabliity to finally come. I got some great responses, but quite a few bad ones. People actually questioned me why I had a child if I know I could not take care of them or why I had one if I could not afford them. Seriously, my daughter was not planned, and my POTS was bearable then, where I was able to work.

I had others say, "well it sounds like you just have a problem standing, so you could do vocab training". God help these people if they ever come down with Dysautonomia. I wouldnt wish it on anyone, but it would be nice to see them deal with it for a day or two.

They also said if I was able to stay consious enough to help with my daughter, I would be able to work. OMG I wanted to punch the screan and cry at the same time. They do not realize what a living **** we go through everyday. sorry for the rant, but I am just so upset over people being so ignorant.

The worst is when people say "oh but to not be able to work at your age is very sad". Really? No what is sad is that I have to feel like this everyday. Forget work, most days I have a hard time getting out of bed. I didnt realize that because I am only 22 that my disablity is not real. That I can just turn it off, like a made a decision. What am I supposed to do? Wait until it finally goes away or I finally become old and then apply for it? AHH!

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I've given up on discussion boards because I cannot take the stress of it. It was having a negative impact on my health.

Other people are logging on with their own issues, including just being naive to what you are going through.

There is nothing simple about this.

I also had two unplanned pregnancies.

I was very depressed I'm sorry to say when I found out I was pregnant with both of them because my life was already very difficult.

As selfish as it sounds-I knew what I was in for-working while pregnant and taking care of the other children and never knowing when my husband would flip out on me or leave. Then obviously the fear was okay now I'm going to have this many children to take care of on my own.

Maybe I should have had my tubes tied but I didn't feel ready for something so permanent.

Then I could work it was before my POTS like symptoms started so I just dug in my heels and did what I had to and basically pledged that it is what I would do that I wouldn't let my family down.

So when I started having difficulty at work that is what I automatically thought that I was letting everyone down.

From my experience it's not so sad that you can't work-you have a daughter to raise and that is just as rewarding and important as any career.

I feel bad now I think here I have 4 kids that I cannot take care of. I feel guilty about it and think sometimes that I should not have had children with everything considered but we can't go back in time and they are here now-I am thankful for that. So the place to put the focus is raising them and doing the best we can with our limitation.

If you can ignore the comments that were hurtful and if I've said anything that also wasn't helpful I'm sorry.

The worldwide web to me just has it's ups and downs.

It's great to connect with people but sometimes we get exposed to things we necessarily don't enjoy and people can be down right rude and insensitive and some even enjoy doing it. There are Internet bullies out there and some people actually pride themselves on the ability to insult others to the point they run people off of groups-I've heard that type of mentality coming from individuals and to a certain extent there is nothing we can do to control others behavior. You can try to ignore it or just avoid those people. You can try to resolve it but maybe 75% of the time things just go downhill from there from what I have seen.

I am thankful that we do have this group we can come to where everyone is polite and thoughtful of others.

I get the impression the type of behavior I described would not be tolerated here. It should be that way everywhere but some forums are so big and the moderators or administrator isn't really that involved or aware of dynamics going on. When incidents come up it can just look like a he said she said situation-one persons word against another.

I'm sure many people still don't understand why I left the group I did but as people with POTS will understand-life is too precious to have one moment disrupted in a petty disagreement. When it's happening over and over or there is any type of bullying or harassment going on it is just not worth it.

I honestly don't miss the group I was in.

It had just become a bad habit I think.

Good luck with your future interactions dani-I'm sure you'll find a way to deal with it.

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Oh forget (wish I could insert another word here) them! We know the truth. I know it is so frustrating and annoying - people (even those close to us) just don't get it. I think the problem is because it's POTS - this "thing" that no one has ever heard of. If it were M.S. or some disease well known for it's bad symptoms, I think we'd have less problems. That's terrible to say I know. Awareness is needed here... I think it's slowly coming. And how dare anyone question you as a mother! Lots of people with disabilities have children and find ways to make it work. Ok, I feel a rant of my own coming on - let me stop here. Try to ignore those people - or if you want, set them straight about this. You know how bad you feel and if disability will help ease your financial burden, then go for it. That's why it's there.

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I agree. Even my own family; mother and daughter do not understand. They say things like "well it's not serious" or "it's not life threatening". Sometimes they expect me to participate in events when I really can't. The other day when I went to the swim club with my daughter and grandson she said maybe you could bring him here by yourself sometime. While I feel somewhat comfortable going with her because she's the one caring for the three year old and I can sit down if I need to or lie on chaise, I certainly don't feel comfortable taking care of him at the pool.Very frustrating. I try to explain but feel I am not succeeding.

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People do not understand. It is so frustrating. We are told, even by our own doctors that it is "an inconvenience" a "nuisance", so we do our best to try to live our lives normally while our bodies are doing things that are absolutely terrifying. My aunt is a clinical nurse practitioner and she does not get it, she loves me so much, but she is certain that I will get better and what I have is not such a big deal.

I was downtown here in nyc on 9/11, it was very traumatic and I had night terrors for more than a year after, I'd wake up screaming in the middle of the night and have no recollection the next day. It took me a long time to feel safe again, I was finally starting to really feel strong and enjoy my life...and then this happened. Like a cruel joke.

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Thought I'd add my 2 cents ;o) People don't understand. My Best Friend of 20+ years hardly lets me talk about it. I went from a vivacious outgoing woman; to a barely leave the house woman over the last few years. I know it gets old, but sometimes we really just need a friend. Someone to complain to and really listen. That is why I really LOVE the people here and this forum.

For me, people FINALLY get it when they see me, because I shake and it can't be ignored. Then I get, "Are you ok?" "Why can't those doctors give you something to help you?" "How can you work?" "You are so young to be going through this?" "Let me give you the name of my mother's Doctor." etc. etc. At least I feel like its finally hitting home with some people, but on the other hand, some of the comments could remain in mouths and not pass their lips to my ears.

But I have to admit that I personally did not understand people with disabilities until I was stricken with this. The old saying "Don't judge until you walk in their shoes." Certainly seems to fit ;) Hang in there and realize that they are ignorant because they are not informed or educated....God forbid they ever have to go through something like this.

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Hi!

People will always be ignorant about one thing or another - you just can't expect the world to be 'up' on everything all the time - Every person alive has their own burdens - their own heartaches - their own trials. Same idea with disability - every person is 'disabled' as regards the ability to do something -- some can't do this - others can't do that ... everybody has uniques stengths and talents -- everybody has their own inabilities, faults, sickness etc...

That doesn't make the person 'bad' --- but it is a part of life we wish could 'let up' for awhile ~ perhaps be gone forever ~ hurt feelings and the fragility that accompanies chronic illness are just plain difficult. But know you are not the one 'disabled' actually in the most important way - but rather maybe they are disabled in a very vital way - which might be a lesser ability to understand or embrace the qualities of long-suffering, compassion, empathy and patient endurance.

The life circumstances you find yourself in - are very very difficult .... yet in some ways they are our teachers about some very grounding life lessons....the dignity of all people, the unlimited capacity to love and forgive others and even yourself, that sometimes the only way to make progess is to truly 'let go' rather than tightening the reigns...

To be misunderstood, blamed, mocked, held suspect, ridiculed ~ it hurts like the dickens and can cause a variety of unpleasant emotions - anger, jealousy, fear are a few. It's a 'super-human' of some sort that can just take this treatment as if it were 'nothing'....

So what do we do .... well the fact remains that you are a one of a kind - one time only breathing miracle of life.... yes a miraculous wonderful human being! There are no limits to what you can choose to do to make things work for you rather than against you with what you have going on. We are all disabled from something!

You have chosen to participate here - a very good social outlet within a group of folks that have a version of one sort or another of 'these symptoms' ... Affirming you are not alone... You are strong ~ yes as weak as you may feel - you are very very strong - think incredible the accomplishment of enduring a day on the 'bad days' - I mean c'mon - it's freaking hard - and you did it --- you did it! No ones opinion matters aside from your own ... as hard as that may seem to believe... We can take in the advice, the ideas, the good supportive talks and the ones where we feel abused -- in the end we take what's useful and toss the rest out like the weekly trash can.... helps to cling to the good and shrink, reduce, negate and blow away to the wind the bad stuff.

When the seeming 'powerfuls' of the world harsh on us - doctors, parents, kids, government agencies - we can shrink from the sting of that - and fear can try to grab hold...in the end - you inside - will be driven to either run the other way, strive for justice in your actions, confront -- you will try try and try again to do what's best for your survival - protect yourself in your vulnerable position - so you can find a place in life to take very good care of you.

Pushing for disability is a very wise decision when the physical and mental capacity to work is threatening or looming - if we don't take care of ourselves - no one else is gonna! Nothing says we will get well - nothing says we will be like 'this' forever - but you have to do what's best for this one day - today. If we don't need it later on - great .... The irony of Soc. Sec. granting a person benefits for disablity - and then immediately helping out with back to work programs -- that don't hamper benefits - speaks to this 'void' experienced when a person is used to working and suddenly 'can't' -- Work is healthy in it gives focus and an outlet to use the whole person - to make a difference in the world....for many it's the only social outlet they've known outside of family.

Many people volunteer etc... Life can seem surreal and freaky without a work life - odd enough topped with all the discomforts of these disorders. Yet you well know that sun-up to sun-down within the 4 walls we call home - alone - can seem an insurmountable challenge with fatigue gripping, negative thoughts intruding etc...

So be true to yourself - forgive the ones that don't get it.... Do what feels right - you can educate them, be patient with them, run like there's no tomorrow from them to create much needed distance... whatever will free you up to concentrate on what's important ... and that is your precious life.... don't let it pass you by battling the unnecessaries - but fill it to overflowing with the goodness that is you...

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Thank you all for the amazing replies! I think I got so upset was because I was on a disability forum. I kinda just thought most would be supportive, but instead, some treated it like a contest of who had the worse disability. I was trying to explain I was applying for adult child benefits since my dad is on disability, and they told me it wasnt right for me to get so much if I have barely worked. I think it was just the downright ignorance and rudeness that shocked and upset me.

Most od tgem had back pain and I know how horrible that is, but you cant compare that will dysautonomia. Them doing a simple google search and saying its just hard for us to stand and downplaying everything was just too much. I thinj I just lost it when they picked on my parenting skills. Sad part is I saw another topic where single new mother was looking for help with her disability, and they are asking her why she became a mother if she is.disabled and how she needs to put her child up for adoption. Just rude

Im just going to avoid other forums like that, but its ridiculous there are people in the same shoes who will kick you when your down...grrr

Thanks again:)

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Learning to let negative things others do and say just roll off the back is a skill -- I am still learning. I'm so sorry you had this negative experience--unfortunately, not all "support" forums are like DINET. The reason I stay involved on DINET is because the rules ensure that people who feel a need to ridicule or criticize others will not find a home here, among other problematic issues found on forums that are not moderated. I'm very glad there is this safe and caring place for "us"! It's so important that POTS patients feel supported and understood, especially among ourselves! :)

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Thank you all for the amazing replies! I think I got so upset was because I was on a disability forum. I kinda just thought most would be supportive, but instead, some treated it like a contest of who had the worse disability. I was trying to explain I was applying for adult child benefits since my dad is on disability, and they told me it wasnt right for me to get so much if I have barely worked. I think it was just the downright ignorance and rudeness that shocked and upset me.

Most od tgem had back pain and I know how horrible that is, but you cant compare that will dysautonomia. Them doing a simple google search and saying its just hard for us to stand and downplaying everything was just too much. I thinj I just lost it when they picked on my parenting skills. Sad part is I saw another topic where single new mother was looking for help with her disability, and they are asking her why she became a mother if she is.disabled and how she needs to put her child up for adoption. Just rude

Im just going to avoid other forums like that, but its ridiculous there are people in the same shoes who will kick you when your down...grrr

Thanks again:)

This is a main reason T quit posting on one of the SSDI forums also. Wow maybe we were on the same one. lol it was my problems are worse than yours so I'm going to get it before you.

I actually had someone post that I was LYING about having a malignant heart arrhythmia since it's so rare so I posted a picture of my page where I was Dx and got my account banned. ROTFL after I got over the shock and anger, I laughed about it, because some of the people there are just so ignorant for lack of a better word and some just do not get disabilities they do not see.

I've underplayed how sick I am to my family until this year when I've worsened. Dr's are afraid for me to be alone; one day I finally broke down and had to call my mother in law and she was so shocked at how sick I looked when she got here; she was mad because I didn't tell them earlier how much I suffer; but she's sick also and I don't want to burden anyone with my extra problems.

listen to your body, you're the only one who really knows how sick you are and ignore those cruel ones

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That is the common behavior that was occurring in the group I was in was people have their own ideas about what is acceptable as symptoms of an illness.

Instead of just being open to all experiences and treatments that are working for people they wanted to place judgement and limitation on what could be talked about.

I tried very hard as a leader to keep that from happening to just make it a friendly environment where all were welcome to share and basically all I did was make everyone hate

me. A lot of people want control....and they fight for it. They gather people to their side and the majority rules. I realized how silly my ideal was to keep it free and open.

I would have needed help to really accomplish that with like minded individuals.

So one of my other leaders I appointed started a nasty campaign against me.

Started doing things herself -deleting posts-and spreading rumors and telling people I was doing it. For me to stay at all I could not prove I wasn't doing the things she was accusing me of so the only solution was to leave and remove myself as the target.

There are just a lot of dynamics that go on in these groups that are difficult to manage unless you have a good team of

moderators to control it.

The subject matter and types of people that you get logging on may make a huge difference too.

Here at diner we basically have people that are sick trying to comfort one another...

Maybe not as much of a hotbed for debate but from what I saw from the place I came drama was occurring in many

groups and leaders were getting frustrated and leaving.

I'm not the only one.

Good administration is a huge factor-I felt I had no support when issues came up.

If I put a note into the admin I wouldn't hear back from him for a week.

I got the impression he just didn't care and that it was all

about the $$$ to him.

That for his business to be successful he just needed people to talk and be posting.

So where this behavior is allowed to go on it just will is what I have observed.

I think for myself it's best for me to stay away from it or

distanced so that I'm not involved in anyway with trying to prevent the strongest opinion from having power over the entire group.

People who see things the way they do will certainly be welcomed but if you have a different experience or viewpoint look out. You may get some supportive posts but you will get those couple that accuse you of lying or being wrong or whatever.

It's kind of interesting how there are people that stay detached from their fellow members posts and just offer support and ignore the rest. They take what is helpful and leave the rest. The people with the nasty posts often want to be nasty it seems so if they are confronted they will often

take it up a notch.

I don't quite understand this behavior-why people would choose to come together in a group but then not try to get along.

I think it's okay to have different opinion-not only is it okay but it's normal but I don't understand why those can't be shared with respect for others.

I worry sometimes that I myself may have come across to others in the same way and it was never my intention.

I started the group and I had good intentions and put a lot into it.

It's just at the end for me we had 1000 members and

difficult personalities.

Maybe their domination and bully tactics will work better in managing all those people than my mistaken ideas that everyone just keep an open mind and try to accept everyone for who they are. Maybe that's not possible and maybe I am not even capable of that myself.

Live and learn huh?

Anyway my opinion based on all that is proceed with caution.

Guard your sensitive feelings when entering open forums and don't be shocked at all when you encouter strange

personalities that seem to be dominating the group. It's a weird phenomenon-but it's what seems to be happening where I was involved.

Also just a tidbit about leaders-anybody there can be appointed a leader. And leaders have the power to ban members and basically say anything about you and you are just out if there. The admin takes the leaders word on it.

The thing is I tried to choose people who would be good leaders but he has this little tab under our leader page where you can volunteer-well that I guess is what happened-I got up one day and our group had a new leader. I approached her in pm and let her know we worked as a team and discussed matters. She told me there was no team and she was self appointed so she did not need to worry about what we thought. As soon as that happened I just knew things were going to go down hill.

She was rude and crude in pm to me then they started appointing other leaders without my input.

So if you join a group and you get banned for some stupid reason-it's most likely just a flaky person who probably should not even be a leader to begin with.

She admitted later in a post that Aspergers runs in her family. I though ah ha that's why you are so rude...you probably don't even realize how you're coming across.

So not to go on and on but as you travel around the net just be aware that not all of these forums are being managed in a prudent way. You're gonna hook up with personalities that are just bizarre and can make you walk away thinking ???? I tried to hang in there and found it really just wasn't worth it. I did have that instinct that I didn't want them to have the pleasure of running me off for a while but when it started getting into quality of life issues for myself...it was like I don't wanna hang out with these people any more...they are just trying to give me a hard time no matter what I do. It was just a daily set up for myself and I was getting adrenaline surges from it.

Don't let it have that same impact in your health.

Enjoy what you can but go in prepared knowing the reality of what is going on behind the scenes.

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