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?

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Replies to This Discussion

Sorry to hear about your rheumatism D.K and your physical problems Leah.
Tomorrow I will have a new eye operation. Please hold your finger crossed

I`m so tired of this physical battle.
You know how it is so it feels good to share some self pity with you :)
My fingers are crossed for You gunilla..good luck on your eye surgery! I Will be thinking about you & also for Devi, with loving healing thoughts..
Thank you gunilla for your comment for me too. YES I too am sooo very tired of the constant physical struggles & pain..
I have disability medical update review -paperwork that must be completed by today 2 go out in mail Monday morning,sigh. Is very stressful! They did not give me enough time to complete it by due date! Was dated 2-12 but I did not receive it in mail until 2-27 !! (due to moving) Grrrrrrrrr...
I'm exhausted, eyes blurry,woke 5am today with a migraine headache,swollen painful hands and have to try get it done this morning,so I won't be able be online much today.
Is bad enough to deal with the never ending physical struggles but to add all the stress of non stop paperwork-to prove I am unable to work, have disabilities- is just to much! ( I also have paperwork to do for my state- of new financial info. due to moving to my new flat)
I could loose what little financial benefits I receive and my medical coverage if I do not complete the form correctly or on time. Argh!!!! and I can barely hold a pen,my head hurts and can't see clearly...
So I am off here now to try to sort out 2 years of Dr's & specialists appointments,tests,treatments,physical therapy, hospitalizations, surgeries, counseling,etc..
Ach!,where to start today? I've been working on all of it for week or so & it just gets me frustrated and confused trying go threw all my calendars,notes,medical records I do have most needed I don't have and no time to request them from so so many places..etc..etc...moan,bitch,complain...sighs..
yes gunilla, I know how it feels & is good we all can share our struggles with each other, with friends that understands and cares..you, Devi and joni..
and others 2 on ipeace ..are not on this thread but that do "talk about our disabling health issues" that understands and that share their own struggles..there are many.
hugs & smiles for all :)
Wish you will get those paper in order so you at least have not so big financial problems on top of everthing.
That is not my problem , have to be grateful for that.

Good luck Leah *smile*
Thank you both for your thoughts & caring words..joni & gunilla..:)
To gunilla i have not read anywhere how your eye surgery went???
I may have missed comment if u did? if not then How did it go? Is your eye(s) better,healing...?? I do care and wud like to know..
warm heartfelt hug x
YAY am so so happy for you Devi !!!! I know how it feels to be able to finally get appointment with good specialists,Doctors...I need still to find a good rheumatology specialist. I saw 1 last year or '08? but she was not good and didn't like her at all,my Primary Doc was supposed find me a new one,but never did. I have asked many times but still none. so again I understand what a relief this must be for you..:-))) yup what joni said..way kewl
I hope all went well for gunilla today..with her eye surgery..my thoughts with her,Devi & twista joni..love you all dearly..xx
Sad to hear about your problems Devi.

"A healthy person has thousands of wishes a sic had just one"

I know no sayings that is more true

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