iPeace Members with Disabiling Health Issues- How Many Are We & Don't talk About It ?
*This is a discussion I wrote on my profile page in July. I have some really interesting replies to it there if anyone is interested in reading~please go to my page. I would love to have some feedback from this group. Thanks and smile...
I wonder, as I go from page to page,meeting new people-making friends, just how many like me are dealing with disabeling health issues? Whether it be ourselves or a family member,and why we rarely talk about it ? I know why I don't.Not here or other social sites.As I go about telling more about me and learning about others. I often know,whether they tell me or not,that like me,they are dealing with health issues that have become disabeling, limiting abilities to physically participate in life outside our homes. Sitting or lying down as I do in front of our computers,participating in life from our homes or bedroom as I do. Not discussing this to anyone else,rarely- if ever. Feeling like a "cyber" person.
Because most all our lives are spent online, our activities are almost, or all online.Our social life is online. Here on iPeace (and other sites).
I have been an activist/advocate &community organizer for nearly 20yrs now.Since Feb. 2007 unable to work. Since last summer i've only been able to do so online. As it became increasingly more difficult over the years I had to cut back on my activities. By 2001 only able to work part time for a local non profit. I still continued as volunteer for other non profits on a more limited level. It was heartbreaking,frustrating and depressing. I found much I could do from my home,my bed online,getting more and more involved as a cyber activist. In Oct,2008 I found iPeace(from facebook) and soon after became my home.The few times I did open up and answer questions from new friends here,as we go about getting to know each other better- soon after telling more about my health issues,they were never to be heard from again. Why, you may ask? Why, I asked myself? I suppose is because they don't know what to say? I suppose is not due to not caring,but because possibly they do care causing akwardness in wanting to help,say the right thing..but not knowing what that is ?.I honestly don"t know? ..But I prefer to think that my "new friend" or already a friend ,that is someone I became close to, that had asked a question which led to needing to explain limitations, didn't dissapear due to not caring but not knowing what to say. I don't know? I rarely ever mention,nor want to talk about my health issues. The fact is whether or not I am correct in reasons those friends never reply & disappear after I answer further inquiry into my health issues,it still hurts. I tell myself it doesn't matter,but it does. I tell myself they don't intend to be hurtful,but it still hurts.
To All here on iPeace: with or family members dealing with disabling health problems please come here to this discussion. Share with me and each other why you think :
1) We don't talk about it.
2) After we do friends,people dissappear.
and in our efforts for world Peace,inner Peace,to help make this a better world. Do you think it really matters that we don't talk about our disabling health issues?
I wonder, as I go from page to page,meeting new people-making friends, just how many like me are dealing with disabeling health issues? Whether it be ourselves or a family member,and why we rarely talk about it ? I know why I don't.Not here or other social sites.As I go about telling more about me and learning about others. I often know,whether they tell me or not,that like me,they are dealing with health issues that have become disabeling, limiting abilities to physically participate in life outside our homes. Sitting or lying down as I do in front of our computers,participating in life from our homes or bedroom as I do. Not discussing this to anyone else,rarely- if ever. Feeling like a "cyber" person.
Because most all our lives are spent online, our activities are almost, or all online.Our social life is online. Here on iPeace (and other sites).
I have been an activist/advocate &community organizer for nearly 20yrs now.Since Feb. 2007 unable to work. Since last summer i've only been able to do so online. As it became increasingly more difficult over the years I had to cut back on my activities. By 2001 only able to work part time for a local non profit. I still continued as volunteer for other non profits on a more limited level. It was heartbreaking,frustrating and depressing. I found much I could do from my home,my bed online,getting more and more involved as a cyber activist. In Oct,2008 I found iPeace(from facebook) and soon after became my home.The few times I did open up and answer questions from new friends here,as we go about getting to know each other better- soon after telling more about my health issues,they were never to be heard from again. Why, you may ask? Why, I asked myself? I suppose is because they don't know what to say? I suppose is not due to not caring,but because possibly they do care causing akwardness in wanting to help,say the right thing..but not knowing what that is ?.I honestly don"t know? ..But I prefer to think that my "new friend" or already a friend ,that is someone I became close to, that had asked a question which led to needing to explain limitations, didn't dissapear due to not caring but not knowing what to say. I don't know? I rarely ever mention,nor want to talk about my health issues. The fact is whether or not I am correct in reasons those friends never reply & disappear after I answer further inquiry into my health issues,it still hurts. I tell myself it doesn't matter,but it does. I tell myself they don't intend to be hurtful,but it still hurts.
To All here on iPeace: with or family members dealing with disabling health problems please come here to this discussion. Share with me and each other why you think :
1) We don't talk about it.
2) After we do friends,people dissappear.
and in our efforts for world Peace,inner Peace,to help make this a better world. Do you think it really matters that we don't talk about our disabling health issues?
Replies to This Discussion
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Permalink Reply by Leah D (Pixie) on
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Yes it is gunilla,very big difference. I do see more ppl. writing about this. Is hard for me as said cuz most time I look fine,so ppl. no understand how hard the littlest things are for me to do for myself.
On Care2 network a writer/blogger with MS is helping many understand with her blogs,I have been writing in comments a lot there lately. Has helped some. But people with good health simply do not. Often don't even try. -
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Permalink Reply by gunilla caisson on
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Yes as you say when you can not see on a person`s outside that someone is sic it`s still harder to make people understand. That is good that there are pages where people can talk about this and that`s good you have started a discussion here. But I think being sic is a little bit taboo in the same way as sadness is...
That`s why we are so needed here Leah ;)
We have a lot to do :) :) -
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Yes my friend,we do ;)
The truth gunilla, I joined this group for the "wrong" reasons
but I stayed and joined your other groups too for the" right" reasons..you may not know,remember or understand the Why of how I first found this group and led me to you and so much here I've shared. It was due to 1 person that had been writing discussions here with bad intentions, so this 1 persons wrong lies became many positive results,as led me HERE,where I found exactly what I needed on this network and I also found my voice too.Where others opened up and shared so much of why they do not always shine. The discussions where I first wrote on here are gone now, when person deleted their account,but the good that was created is still here and put me where I was supposed to be..where I do all I can to help others as well as myself.
Friendships/ family were formed from sharing our sadness and our laughter.
yes gunilla I do think you are correct that we have much to do..Let us say No to taboos..and Yes to being true to ourselves and others :-) -
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You are right Leah it started a bit strange because of an other person involved, who I liked too. maybe I was fooled. i do not know. I do not want to think so..Who want to get fooled?
Anyhow this is history now...and I have to learn to live with these disappointments... But some still hurt... -
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Yes is history gunilla ..but was many reasons why I wrote a bit about it..not trying bring up the situation again but some things recently made me think about it, in my life and in that of a few friends..
No gunilla it was not in any way a failure for me,You or others that cared,as you see so many positives were created. I only wrote what I did as I wanted to be both honest & show how bad intentions of 1 person,
can become positive results for many. That It is ok to sometimes like or care for a person & later learn not who we thought they were. I see these experiences not as a personal disappointment but as learning experience & search for the positive results. This is just example of how we as people with health issues,sadness & grief can move forward rather than dwell in the disappointments,as life is full of them. I don't think I could face each challenging day if I allowed all the people have caused me hurt or disappointments (which are many) to cause me to feel foolish or as a failure.
I learn,grieve the loss & move on. Sometimes this is very hard to do,as the hurts do remain,some deeper than others. I thought of all this, as have been reading of D.K.'s hurt,disappointment by a friend that fooled her and how this caused her to feel about herself. You see, when others that we cared for do things to hurt us or cause feel fooled it is their issues Not ours,we are Not ones responsible ,it is their loss,their issues, for creating the disconnect from good people cared about them & trusted them.
I have tried explain this to D.K. and to you. In the process reminded myself that when I allow others into my life is a risk to be hurt. However, I do not take responsibility for others issues,is theirs not mine and I do not allow it to cause me to feel bad (ok for little while it does) as being "fooled"happens.
I will not let this cause me not to trust or care for people. If I did then am allowing that person to make their issues become mine.
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Due to my disabling health issues I have lost many people I cared for and loved, were "good friends" & also family members. I see it as their inability to deal with my limitations, it hurts awhile but I try understand Why they needed cause disconnect from me,was their issues,not mine. I don't feel as if I was fooled, but as their inability to be honest with me,communicate what they felt in a positive manner,so they create bad situations.This is something happens a lot,not just me but for so many people. If we look at the "Why's "of why people do hurtful things,it makes a big difference in how we deal with it,feel about ourselves. It is sad that most people don't know how to communicate their feelings honestly or even to their selves. It is unfortunate the hurt gets created because of this, it is my hope & in part what I try help to teach others to do. Sometimes I succeed but sometimes I get hurt in the process. I try to understand the "why's" & learn from these experiences and move on..
D.K. dear friend,if you read this,I hope helps you with what you are dealing with..of betrayal of that "friend" hurt you with saying you could live with and then turned back on you. Is not your fault hun,
YOU did nothing wrong, is nothing wrong with being a caring trusting person.. -
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Yes you are so right Leah in what you are saying and my intellekt buy it all but my naive heart doesn`t allways walk hand in hand with my brain...:)
So I get very easily hurt from what i see as some kind of emotional betrayal....
I know I know ...Have to work with that ...*smile* -
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Because of gunilla's many groups we are all talking about our health difficulties,or life difficulties due to disabling health issues. At least I have. Along with so much other troubles in my life. The people I have met here and on the other groups, I feel less "silenced" and more "accepted" as I am..pains and sorrows and laughter and joy..
Things with me go up and down emotionally. But physically as winter arrives,has taken a huge turn for the worse. I spend my days & nights here in my bed,undermy covers snuggled with my dear kitties. In constant terrible body pain.
BUT, I have all of YOU on the internet,this group & groups to leave this painful body,this room ,this bed and dance,play,talk,write- share my thoughts & my life with. It is what keeps me going,sane and brings the worldwide friendships made to my room. In this cyber world I can do all the things I can not in my life here at home.
Soon I will have to figure out how to manage moving..as my body is not able to pack,lift,bend or even sit ..so how am I to move all my things? How to sell off what is not needed,with the cold dark days of winter?
With Holidays fast approaching too..
I don't know, will soon find out. As many here already know..the woman that gave me a place to live,that became a home, became my family had her property foreclosed on over month ago. We will soon find out how much time we have left before we are tossed out.
It's scary very scary to not know where to go? To not have a home or family to share it with.
My fiancee' Des is across the big pond in Scotland,doing all he can to help. We so desperately want to get me and the kitties moved to Scotland,but so much to be sorted first and money to save up..etc. So, no idea when can get there and get married:(
'till then me and my furry children need to find way to survive,find a place move to and how I'm to physically manage it ? -
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You are strong Leah. I admire you. My "only" problem is my health you have so many more...
I had learned to live with my health problems until these problems with my eyes started...
Now I do not know...
Hope you will manage to go to Scotland with your cats and reunite with your Des...*smile' -
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Me too gunilla ..I also have not always the heart and mind walk hand in hand, is why I get hurt easily, but I also heal quickly from that hurt to by looking at all the way I explained. Does not mean I don't get sad by it or hurt. I do..but passes quicker as I understand all this well.
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Oh, sorry hear that Devi:(
I do understand as I have experienced BURN OUT many many times in my life when working,whether was a paid job or volunteer positions..I used to be very active in volunteer work..
sending you lots of healing energy,well as much as I can since I am sick right now.
I've missed you Devi...since you are working so much now and not online as much..
Hugs :) -
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Through my daughter I know Devi how hard this work can be on all levels...
But my daughter love it, even if I`m worried she can be burned out too, She is so engaged...
One maybe have to find a sort of distance ..To have force to stay in it over time -
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Good Leah that you have opened this discussion on the Child Within too.
In these days this is just the right place for me :(
With so much pain I must have done something terrible in my earlier life or something ;) -
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