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 gunilla caisson on
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I know it became confusing with a network with the same name as a group. But as I sad i can not change it so...
What to do? -
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Permalink Reply by Leah D (Pixie) on
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we continue gunilla.., as we have been and all will work out..;)
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Permalink Reply by erika on
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Did that happen here? What happened? I hope I wasn't involved. If I was - I did not know I was doing it.
<3 -
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I was about to delete this discussion on "my discussions/profile pg." when a wonderful woman Marique left a comment that in many ways said,described much of how i felt & experienced!.Thinking after I wrote it, no no one will want to discuss this,Why? well as many have told me and as I have felt myself..that as we make new online friends-I (we) don't want people to view us differently,after chatting,getting to know each other. Don't want ppl. feel uncomfortable in the not knowing what to say,to loose yet another friend. I relate so completely to All Marique wrote in comment to my post..
Years ago,before my health declined to the "Disability" status,my ex-relationship had terrible seizures from head trauma due to car accident. He had been so destroyed by loss of wife(who left him in wheelchair barely able speak or remember his own name&took all his money and porsch) He had to relearn everything,lost his memories,including his daughters childhood. His parents had control of his finances and stole from him too. So when met me needless to say his trust(in women especially) was destroyed. I was with him 4yrs. he was also a touring musician,rather well known,so had to keep secret from nearly everyone my struggles in dealing with all his health issues,ironicaly after all I did to restore his faith in women,standing by him threw so much,when my life started to fall apart from my health probs. he bailed on ME. His seizures were from the "momentary short out" to grandmall,he would have personality changes
so docs put him on psych meds.no memory after of what had happened. A long list of additional medical issues were caused in part by the meds. When he bailed on me( early 2001) I had lost both my jobs,unemployed 6mos or so,just started a part time new job with local non profit I had worked with over 10yrs or so and knew ex. director & many others,so I was treated well. However the first seizure like episode I had in office "freaked out" my coworkers,many who were like family to me. I started having trouble fulfilling the 3day a week requirement to keep job. Put on medical leave,paid 6wks. year or so later. Exceptions were made for me for sevearal reasons, I was very good at my job, and well respected. But I was also cared about by employers & coworkers. As I said in post above by 2-07 I was put on indefinate medical leave,as could not even do 2days week 5hrs a night.Not paid. I had lost so much already, relationships,family,friendships,job then lost my home. A friend took me in,became my family the roof over my head became a home & my dear friend became my "adopted mommy".. I still can't hold a job,my disability income not enough to live on,my friend is now facing foreclosure on her(our) home & property,helpless I am to contribute enough financially to stop it. She also became my caregiver as simple day to day things am unable to do,I do what I can on days am able. I have not gone back out into the world to make new friends, I don't date,tried briefly last summer. My life,friends and my Dear betrothed Des(met here on iPeace) is all in my computer,my only connection left to the outside world. So, I don't tell people about theese things,not risking loosing anyone else. My relationship,man I fell in love with here on iPeace,when he booked a plane ticket to come see (meet) me,1st time.well I was terrified! I told him everything I could think of about my limitations,fear that he would see me differently, or worse bail on me after he saw me in person,day to day struggles in unbearable constant pain. He said did not change how he felt. I didn't believe him, not 'till after we spent 3wks together.as of 30 th May we are engaged,happily,joyfully in love.Has been here with me in US since 1st July :-))
So, I wrote this discussion,wanting to pose theese questions (above)
Thank you dear friends for sharing your replyies here with me. lots love,Leah D. -
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Tell me a problem you havn`t had. O my God what a tough life.. Ì`m impressed you still are in one peace..
It`s strange ..... here on i Peace so many are so extremely "shining" and at the same time I have never met so many with so extremely sad lives stories... So much sorrow so much pain...But still they all seem so positive to life at least in their short comments. But when people dare to open up...I have problem to see a single ray of sunlight i their stories...???
Are you life under control now Leah , have you still a loved one in your life...? *smile*
I wish you all the best. You have really had your part of troubles...Now it can only become better -
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Ohh dearest gunilla yes my friend as I wrote in my comment my fiane'e Des is here with me now from Scotland :-)) and I have my chosen"adpted' mommy Vivy that takes care of me & my kittie family...I live in a lil 1 room back building from main house,few feet behind,she makes sure i eat and have a home here..but we r loosing property due 2 forclosure:(((( am sup[osed 2 be moving to Scotland & marry Des there..but we have no money~yet to move me & kitties,i do shine & stay positive gunilla..most of the time..some days am scared cuz don't know what will happen,as i seem loose all i love when times get tough..is hard to care 4 someone that has such severe medical problems..all have left me alone..Vivy says she won't,so does Des,have 2 have faith..all can do,sometimes i distance myself emotionally from them cuz think will also bail on me when things get hard(er)..am smiling dear friend. Thank you soo very much 4 ur kind,caring reply..smiles
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This is Pandora from the mythology. She left everything goes the only thing that remained in her box was The Hope So we have to keep it too *smile* -
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Thank you dear gunilla yes HOPE..i lost it for awhile but is back now..smiles x
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also I want to add that all my dear loving online friends/family gives me much hope and support,i don't know how I would get by in life without all my amazing/loving dear friends..smiles :-))
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Thank You Devi for commenting here and bringing awareness to "National Invisible Illness Awareness Week" I was unaware of it until your blog post today..
I'm with you on not looking for nor wanting pity~ understanding & support yes,pity no...
I will be checking out your link soon. Then reply to it.. Thanks again Dear Friend. -
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This was my reply to D.K."s Blog post today:
Dearest Devi~ I have many of the "invisible illnesses" you listed,have been on disability since Spring 2006,struggled many years to maintain some semblance of a life!! Since the 80's..but then I was younger,stronger. In 1990 I gave up on Doctors and went completely holistic. It kept me going longer. Due to divorce,finances,jobs & life in general by 2000 I was unable to maintain holistic,natural lifestyle..I got increasingly worse. Dr,'s by 2001 medications and "care" made me worse. New illnesses were created,including osteo penia,perosis ( reversing it slowly now) heart probs. Wolf Parkinson White,teeth destroyed,etc....I manage to improve for awhile,usually in spring/summer. Winters getting harder on me every year. Is hard for most to understand cuz I "look" fine,is annoying! So I tend to isolate myself since lost my job in Feb. 2007. I actually spent a year with almost no contact with anyone,not online,phone or leave house, about year 1/2 almost 2yrs.ago.My life,social life has been almost entirely online since. Also, I lost my home in 2006. Just before my disability was approved. A kind friend took me in. Today the for closure papers for her home & property I live on arrived by sheriff at her door! Due to my fiancee' Des my health,strength improved this summer. He had go back to Scotland on 10th Sept. Terrified to leave me here. Worried about winter coming,the possibility of for closure on the property,etc.
He is doing all he can(as am I) to create an online biz together, he's looking for jobs for quickest way earn money,so he can get me & kitties to Scotland,get married, get me the hell outa' the US to where I can get universal Health Care in the UK. Where they don't toss people out of their homes when illness & debt causes financial difficulty.
I wrote a discussion on my profile and a group(WE Can't Always Shine) about "ipeace members with disabling Health Issues and Why We Don't Talk About It" Please feel free to leave a comment there as well.
Thank You for sharing Devi. I think it's important that we DO talk about it.
Love & hugs
your friend Leah -
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I have accepted now that people with good health will never understand. I have given up trying.
They have thousands of wishes, while We have just ONE... That`s a hell of a different... -
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