Working Or Not....generally Not A Choice

[Ernie]

Hi,

I don't know if anyone noticed but out of the 13 top posters 12 cannot work (are disabled and can't work). Those posters are generous of their time, knowledge and help many others on the forum. I don't think the non workers mean to hurt others but they want to share their feelings as they have walked further on the road of having this disorder and mourning their losses. We cannot totally understand someone until we walk in their shoes!

[MelissaCrystal]

Morgan, I hope you don't think I was referring to your post---I was just referring to negative comments with the jist of "I hate when posters say this", because I don't want -anyone- to be afraid of posting their feelings (about not wanting to work), especially when it isn't meant to offend anyone at all.

[Sophia3]

Hey Morgan...long time no see your name here!

Wow, I did not see this thread taking a negative turn either. Just "variations" on this illness as mentioned earlier. Honest feelings. But choices are something few of us have anymore except 'between our ears' in how we react to the situations...but that's easier sometimes than others . . . .

[morgan617]

No offense taken Melissa, I just felt I needed to clarify a bit. I was pretty rummy with the first post I wrote and can understand how it might have been misinterpreted. We are all in this together, and most of us frustrated by our lives at any given time. I think Ernie said it very well. We are all on varied and different paths, some having gone through most of all of this and closer to the the end than the beginning and others every where all along this path.

I have gotten much better at not taking anything personally, unless it's some crummy doctor judging me, but not on forums anymore. And a post can not be interpreted like speaking in person can ever be. When you can't see the person, hear the inflections, or see the body language, it's very easy to hear what you want. I had to get about a million lectures from the hubs before I finally realized he was right! LOL.

As you can see, I've been here awhile and posted a couple of times and know that sometimes these can get a bit unsettling before they get back on track. I think we are all fine here...morgan

[morgan617]

Hey sophia, (not to hijack) but I never realized how much a broken collarbone on your dominant side can affect your ability to do anything. It seems to be just about back to baseline, as long I don't allow a P.T. push it around..LOL Nice to "see" you too...morgan

[MelissaCrystal]

When you can't see the person, hear the inflections, or see the body language, it's very easy to hear what you want. I had to get about a million lectures from the hubs before I finally realized he was right! LOL.

Hah, I know exactly what you mean. My boyfriend and I had to promise each other not to ever talk online when we're upset with each other, no matter how small it is. Helped a lot! Things can go downhill fast when emotions are misinterpreted online, that's for sure.

[mkoven]

I know know one meant any harm. I just started feeling like there was a problem when a couple still-working posters said that they will either refrain from posting in the future, for fear of offending or fear that they are being asked not to mention the challenges of working with dysaut.

[juliegee]

I appreciate hearing from EVERYONE, and my heart breaks for so many of you. I Know Melissa didn't intend for us to be fearful of posting our experiences, just cognizant that we are all in different places.

[morgan617]

Thanks, I was trying to think of how to word that, but couldn't. We are all at lots of different places in the course of our illnesses and what may apply to some has no bearing on others, what hurts some, others haven't experienced yet, and hopefully never will. Having known sunny fish girl for a long time now, bitter is not a word I would use in reference to her. I think we all struggle with our feelings and we all need to be able to express them, without fear of any judgement from anyone on this forum.

I can't remember who wrote the apology, but I really don't think that's what miss sunny fish was looking for when she started this thread. (sorry melissa, I am taking liberties here) like me, she is not bitter about what we have lost, she just doesn't want people to think we are better off or worse off. Just in a different place. And words that can seem very innocent to the writer can sometimes be hurtful, even if said with no thoughts of malice. We are all a bit sensitive here at times. I do not believe there is a single person in mind when we bring up subjects like these. They are general statements, just as she said they were. And no one should have to feel they must apologize or become defensive. it's just food for thought. period. And as ernie so eloquently stated, until we walk in someone else's shoes, we really don't know what it's like.

And I will reiterate that a computer is not able to send the feelings behind the words. A sometimes very hard lesson to learn, especially if this is all you have as an outlet, which is unfortunately the case for far too many. This is a tightly controlled forum, but I see that as a blessing and an opportunity to express ourselves more openly without things getting out of hand. I hope others see it that way too. mama morgan

[flop]

TIME OUT

Okay, I'm going to blow the moderator's whistle and just ask everyone to take a step backwards before saying anything else. I think that this is a valuable thread as it has shown how much emotion is attached to this very delicate topic. Having read all of the posts through a couple of times I think that there is some mis-understanding going on but no intentional upset - so I am not at the moment going to edit the thread.

I believe that everyone who lives with dysautonomia is disabled, there are some with minor disabilities, quite a lot of us with major disbilities and some with severe disabilities. By saying "disabled" I make no comparison to whether people qualify for state benefits (I realise how unfair the US system is and many of you are denied what little financial help is out there), I simply mean that there are every day things that you are no longer able to do. Not being able to play frisbee makes you disabled and I'm sure that most of us are not able to play frisbee anymore????

The original post was about how dysautonomia forces us into situations beyond our control. We have all experienced that.

Some people are in much more stable financial situations and may be able to CHOOSE to stop working at the stage when work is hard but not impossible. Most people don't have that luxury. I suspect that the vast majority of people here who aren't able to work anymore were forced out of work.

Someone stated the choice of giving up work or being fired - that is not the choice originally being discussed (that is a choice of how your work is terminated not whether it is terminated) and that person is in exactly the situation that Sunfish was pertaining to, being forced to stop working due to being physically incapable of working.

I fully apreciate that there are a lot of board members who are in the situation that I was in recently - doing everything within their power to drag themselves out of bed and attempt to get through a shift at work. Those of you in that situation will know that choice doesn't come into it, given the choice you would roll over and go back to sleep, huh? BUT for some there comes a day when no matter how hard you try there simply is no employer who would employ you as you are truly incapable of any productive work.

I'm sure that no-one here intended to to seem unkind or judgemental. Please keep this thread within the forum guidelines by trying to be supportive and inclusive.

thank you,

Flop

DINET Forum Moderator

[MightyMouse]

Hi everyone, I'm chiming in REALLY late on this and haven't gotten the chance to read through all the posts here so my apologies for that... regardless, as flop said above, working/not working is a really emotionally laden topic. Many of us who've had the opportunity to at least start some kind of career or even head down that path in school define ourselves, at least in part, by what we *do* (or *will do*) in our professional world. The loss of the ability to work, or work in one's trained vocation, or even loss of the ability to make a choice to head in that direction can be excruciatingly difficult and a very painful blow emotionally. It's no surprise that this discussion contains loads of emotion.

That said, I'd like to remind folks to take a deep breath, and remember that because this isn't a face to face, human to human discussion, we lose the tone and you miss the opportunity to "read" the other person's body language and facial expressions to let you know how they're feeling about the topic... I think that there is a Buddhist quote that sums up what I try to do when I'm feeling really emotional about a topic and I'm about to reply... Remember the power of your own actions and thoughts...

"If you want others to be happy, practice compassion. If you want to be happy, practice compassion." -H. H., the Dalai Lama

Nina