iPeace Members with Disabiling Health Issues- How Many Are We & Don't talk About It ?

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?

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I have many feelings about these issues and find it quite difficult to talk about so openly, but I will give it a try..

It seems that disability discrimination is built into the very fabric of modern society. There are a lack of adequate or appropriate mechanisms for people with any form of disability to feel that they are being treated on an equitable basis. There may be some pockets of equality, but I feel that disability discrimination is endemic in most societies throughout the world. People who speak out about disability in the workplace, either in general or about their own issues are often ostracised by colleagues, which is soon followed by a subtle process of marginalization and subsequent elimination as an undesirable. I have seen this happen, both to me and to many other people in my lifetime. With all the stories in the news about people being treated unfairly by snooping employers for revealing too much information on social networks, it doesn't surprise me that some people feel reluctant to be open about their feelings toward such issues.

I think of many things as being disabling, including behavioural conditions, physical disabilities and many others that I am not able to mention due to me still being in the process of learning and understanding about these issues.

I had been suffering from several years of feeling permanently disabled from going about my life as I once did before. I went through several traumatic events which changed my whole outlook and perspective on humanity. The events I went through gave me some insights into human behaviour that I hope not many people will have to experience. What I learned made me feel cynical at the time. It also took its toll on my health, but these events were the start of a process of healing and change in my life that has continued to this day.

I have felt the stigma attached to discussing many issues about myself to others because the reaction is often a combination of disbelief, misunderstanding, awkwardness, discomfort, social distancing and plain outright rejection on some occasions. It seems that it is difficult to find understanding people who are able to really listen and be genuinely supportive at times, but iPeace has such an abundance of loving, caring and understanding people that I feel there are many on here who can be genuinely supportive in troubled times. iPeace has been of enormous comfort to me since I first joined and has given me a renewed faith in the power of the human spirit.

In my life, I have done the best I can to put myself in a situation where I no longer need to worry about conforming as much to an accepted pattern of behaviour e.g., in terms of what personal issues I can and cannot safely talk about regarding my views on others disabilities, issues and my own personal problems, however, the underlying fear is still there that I will be discriminated against for being less than a perfect human being.

I feel it is important for us to talk about these issues. I feel that we must do all we can, if we feel able, to express ourselves honestly about how we feel about these issues. This in turn may make it easier for others to open up and express themselves.

Best wishes to all!
Des.
Des~ I do think the fear of being seen differently by friends & the possibility of rejection is another reason we don't discuss theese things freely. Also,as you said the possibility of causing discrimination in job market is a big one as well. I no longer have to be concerned about employers,but in some situations of non profit volunteering work,it remains a concern. My "disability status" does make it difficult if I were able to work part time again. Thank you for leaving a comment here, it means alot to me and I do understand all you said. iPeace is a safe haven of loving caring understanding people. Even with that said, I have had new friends dissapear after discussing my limitations. I wrote this post hoping to get a good discussion going about this,even though only 2 replied,what has been said here I do hope makes it easier for others to open up & express themselves more freely. I know it has helped me. Thank you & Marique for your open ,honest replies. Many Blessings and..
Much Love & big hugs xxx
I can so relate with this post and I like you, have wondered about the "tabu" that seems to exist in talking freely about having physical limitations and about the difficulty in sharing freely without qualm a "disability" that one might have and discussing how this ties into your day to day existence. Des's reply was an excellent synopsis of reasons for the decision not to talk too freely about one's "disability". I am a disabled person and I truly do understand all the ins and outs of disclosure of disability in certain situations, actually about ANY situation other than if one is in the hospital, and then it is stylish to talk about ones ailments, lol. I feel free here on Ipeace, among the most loving people who I have been blessed to come in conact with, to say that I have a physical condition, a dire delema with my brain from an injury that makes me have debilitating seizures that are uncontrolled by even the strongest medicines available. What a stigma that is for many people who have had to deal with me in their life. Even my best friends in life live in fear that I may have a seizure in a social situation when I am with them and that they will be embarrassed. Seriously.....Sad but true. It creeps them out, and quite frankly I am glad in a way that I cannot see myself when it happens to me because it would probably freak me out too, lol. True friends are hard to come by when people are afraid that attention is going to come their way when they are with someone socially that all of a sudden crashes to floor and starts flopping like a carp on a baithook, lol. So I know all about stigma. In the "got to make a living to earn money to exist arena" every time I applied for a job I had to tell my potential employers that I have seizures because doctors advised I do so and my own conscience felt the need for honesty for what they would be getting.... and that was pretty much the end of the line on most interviews and job prospects for me, and any jobs I did get, the first seizure and I was gone, let go and told I had no place in the workforce because it was frightening to those with which I worked with. Did not make me feel too good about myself in the work world, and the more I worried about having a seizure, voila, the stress would cause one, can't win, can't win......Not that I am not a capable person, simply that I "short out occasionally" to put it simply. I worked all my adult life at responsible jobs that I was fortunate enough to be hired for, pity hires I used to call them.....they wanted the bonus for hiring the handicapped mostly part of a quota thingy...... but it was always a struggle on many fronts, because I was always treated like the company lepper.....pussyfooted around, and looked down upon as poor Marique. Not too good for the psyche I have to say. There is much discrimination out there. Also I have crippling degenerative arthritis and have needed many spinal fusions to keep me erect like a primate.....also a damn nuisance and also another pu-pu with potential employers......time out from yet one more surgery and recovery.......also it is difficult around people in general when one talks openly about how your body has a vendetta against you and makes living in it challenging mostly, lol. But I am honest in saying that finally being considered disabled by the government and receiving a disability pension releasing me from the struggle just to make it through a workday in one peace without flopping on the floor or being in a body cast and walking with crutches which I spend much of my time in..... has been the best thing that has happened to me! Disabled and proud. Ironically now that I no longer go to work all day, some of those friends who are embarrassed of me now actually envy that I do not have to go to work every day, go figure.......ah life is so ironic..... Only now that I am able to set my own pace in life, do what I can on the days I am able to and start to look at myself as ENABLED to live my life more comfortably than when struggling every day just to be quote quote normal among the normal......I now longer feel disabled at all. I feel that I am just me now, and in control of my life for once instead of my body controlling me. I no longer feel a lesser person because my body is in mutany against me, and now have the time to concentrate on REALLY living and enjoying the things I can at my own pace and really being able to grow to love people and nurture relationships without stigma. This to me is not being disabled any longer, but instead being ENABLED. I do understand why people are uncomfortable talking about bodily ills and such, in their hearts they are thinking, dam I am glad that it is not me...and makes me uncomfortable having to think about what if I had to deal with it........human nature is like that. That is why friends can often run when the going gets tough or avoid you when you are laid up, because it makes them feel like they somehow have to say something to make you feel all better and haven't a clue what to say.......this is why I think people are skiddish, I could be wrong...... don't know if any of this I just said makes sense but felt the need to reply to your wonderful post, and thank you for bringing it up.

Marique
Oh my dear Marique! Your reply to my discussion couldn't have come at a better time nor worded explained written so well! I was about to delete this Post! Thinking after I wrote it, no no one will want to discuss,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 you wrote here. 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 momen especially) was destroyed. I was with him 4yrs. he was also a touring musician,rather well known,so had to keep secret from nearly all 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 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. 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 (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,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..now as of 30,may we are engaged,happily,joyfully in love. So, I wrote this discussion,wanting to pose theese questions (above)
Thank you soooo for your sharing,your openness&wonderful reply Marique, I like you too :)
I am so glad that I posted a response and that it somehow made sense to you and hopefully others. This is why I love my online friends so very much. It is like the universe opens itself to me via computer and I am able to feel there are others out there that can relate with things I have gone through, am going through, and there are caring people in the world after all. I do not do so well in person due to my "limitations" but in the world of internet I am allowed to be who I am, say how I feel, and hopefully brighten someone's day. I am alone most of the time, but never feel alone as long as there people out there in "life" that can hear my voice, feel my thoughts and are willing to listen and to receive me and whatever good I can bring to their lives. Sure life can be a lonely frightening affair sometimes, especially when health is an issue, but my online friends have made my life one that has meaning and depth and it has made all the difference to me. Bless you for feeling free to say what was on your mind, and for helping me realize that I am not the only one with challenges to be met like my own. God bless Ipeace and gratitude for having such wonderful friends that understand.

Love to all
Marique

Marique~ I am so glad I didn't delete this post,your reply(s) have meant alot to me,your words above here could be my own..I feel the same as you,all you said there. I am alone most always,1 friend looks after me & my kitties to make sure we have food,basic needs,checks in on me..ipeace is my family,my home and my online friends are everything to me! including my dearest betrothed,who will be coming back soon to be with me :) we spend all day online with each other,here. chat ,phone..so I don't feel alone at all.
Am sending you big hugs and lots a love Marique x
This is for Des & Marique..ty for your reply's ..hugs x
It is especially true what you said about people not wanting to talk about death. People get uncomfortable around people who are terminally ill and don't know what to say, and generally avoid contact when at all possible. And it is true the thought process is like this "poor person, so sad, glad as hell it isn't me......" I don't want to say or do anything to make the sick person uncomfortable so I will just avoid that person all together. That is why so often in nursing homes a lot of elderlies are very lonely, because even people in their families do not like to go see them because it is frightening to them. When they go there they think, oh my god this could be me here when I am older, and it scares the hell out of me. So sad that people do not know how to deal with the dying process and the aging process....creates more fear and yet more lonliness. That is not what life is supposed to be all about.
Yes Dear Marique & Violette this is all so very true & sad. I have never feared death,but know many who do & don't wish to discuss it. Also, I agree that people just don't know what to say/do & absolutely are thankful NOT them or fear it!! I dearly LOVe elderly folk,always have. I honour my elders as was once the custom to do, now in US are treated as "disposable" people, I enjoyed volunteering at "adult day care" & nursing homes,when I was able to. It is very sad however that few family members visited and how lonely it is for so many.
We took care of my Grandmother before she passed at home, where we took turns looking after her ,she died from a brain tumor. I was saddened by her absence but joyful she passed at home knowing she was loved .. I will NEVER let anyone put me in an old folks or nursing home!! I will die first.
Much Love to you both & thankyou for replies. smiles 4 u..hugs xx
Blessed Be Sweet Violette
Leah and the rest of U's1

I have read the first posts and i can't read more right now, but I will stay in touch.
I have a feeling I will need this "room", I have waves of my depression.

I will come back.

Love, Erika-
Ok erica, I look forward to you returning here. Depression is something so many of us deal with,I do. too.most of my life. I have found many ways to deal with it on a positive way..see you soon dear friend.
Much Love and hugs
Hello erika,
Where are you ? I have not seen your words on ipeace or TCW in sooo long..i miss you. Though
glad we do stay in contact on Facebook ,sometimes. How are you erika ? I would like to hear from you and tell me how u are and your children are too.
Hugs x

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