I have a new article on Ncubator.ca called The Incredible Power of Ignore
Jody, so eloquently put.
Your article stirred up many intense emotions, almost close to tears in fact. You see I have a friend who has CFS and is in the same predicament that you mentioned. Her family is in denial- there is no real help.
She cried out for help and I feel so helpless! How can the drowning help those who are drowning?
She needs practical help- her kitchen floor hasn't been washed for months, her freezer hasn't been defrosted for years, her sheets haven't been changed for weeks. What can I do?
Most people think she exaggerates, is paranoid and "talks too much" to be really sick. They talk about assessing her for care and putting her in a home. They know nothing- it would kill her.
When I talked to a friend about this I said "This could be me- it scares me that the chronically sick can be abandoned like this."
I am so disappointed and heart-sick... but....
Write on Jody!
Snez
Great article - I got little tears too. Reminds me of a situation where a friend of mine got an award for starting and running a music competition. Well, the real story is, I started the competition and ran it for the first two years myself, (then got sick), then handed off to this guy and had to babysit him through running the competition for the next two or three years until he got the hang of it and could run it himself.
I was feeling pretty low, thinking everyone (including my BF!) had totally forgotten all about my many contributions, when another friend of mine came up and said "I remember who really got the whole thing started". It saved the day for me, to know that there are still people who remember and appreciate what I did (even though some others seem to want to rewrite history).
Jody,
thank you so much for putting into powerful words what many of us are going through, yet cannot express in the same way.
It says a lot that we need articles written by other people to try and explain those closest to us how we feel. Or that in fact, how we feel is not abnormal.
The pictures of the burning house and the drowning describe exactly how I feel like most of the time.
There are moments when healthy friends experience just a glimpse of the isolation we know all too well: My sister had to stay on her couch for the last 2 months of her pregnancy and she fell into a mild depression for not being able to go out for "such a long time". There was one day when it hit her that this was what I had been going through for so long, with no end in sight and she got all sympathetic and scared. The moment passed, and she now hardly ever calls to ask how I am.
Snez, I am so sorry to hear about your friend. I can really relate to how you feel about not being able to help while knowing exactly how much she needs it!
It is my worst fear that one day there will be no one left who is able or willing to take care of me. I couldn't even buy me food then, let alone have any money. It is so depressing, but all the more reason we have to fight this with what (little) we can do and make sure there is a better future ahead for people with chronic illness. I know we can.
Thanks Jody, for writing this article. Nice job.
I know this invalidation reality so very well. When I first got sick, my mother and sister treated me like an embarrassing inconvenience. I could barely stand up and walk to the bathroom, so my mother threw a hissy fit about how bored she was because I wouldn't go shopping with her for "a new outfit." And my sister used to yell at me, "I just want a NORMAL sister!"It's almost comical to me now, in that bizarre dark humor I-can't-believe-I survived-that-insane-family nightmare kind of way.
At this point I have a zero tolerance policies for invalidator alligators.If you don't believe me and can't respect me, then there's the door, and don't let it hit you in the butt!
I am so glad I got in touch with my anger,or I would still be begging mean people for the help that they were never willing to give.
It's amazing the types of reactions you can get hit with isn't it.One would hope that this wouldn't happen with family, but so often it does.
I agree, sometimes you just have to cut your losses. Be realistic about what someone is like -- not just what we wish they were like -- .
Yes it does say something about how flattened we are by this illness, when we need someone else to speak for us. I remember a time when I was incapable of telling someone how I felt, what it was like. I was physically, neurologically, unable.
And it is a sad commentary that the gap between us and others can be so big that it takes an "interpreter", or an outside party (like me or another writer) in order for people to listen and consider that things really are this bad. too bad they can't just believe you. Really listen to what you are saying, absorb it and act on it. But so many don't so I'm happy to try to be an interpreter or a facilitator or a negotiator or ... whatever the hell it takes, eh?![]()
Whatever any of us is feeling is not abnormal. It may be uncomfortable, and certainly not politically correctbut it is normal. And I think that is part of why I write too. Because it helps to hear that someone else feels that way. That someone has had that symptom and that reaction. And that they are angry. And not feeling too grateful for crumbs. And that we are aware that we are not treated with civility, decency or compassion so much of the time. And that it grates us intolerably.
Oops, started writing another article.![]()
know this invalidation reality so very well. When I first got sick, my mother and sister treated me like an embarrassing inconvenience. I could barely stand up and walk to the bathroom, so my mother threw a hissy fit about how bored she was because I wouldn't go shopping with her for "a new outfit." And my sister used to yell at me, "I just want a NORMAL sister!" It's almost comical to me now, in that bizarre dark humor I-can't-believe-I survived-that-insane-family nightmare kind of way.
Hi Jody
You're such a good voice for us! thanks yet again.
It seems to me that sometimes I'm just not capable of explaining, of marshalling my thought, of opening my mouth, let alone higher order things like thinking about who I'm talking to and how they see the world and how xxx would be best put so that they'd get it..... It sometimes takes me years to develop a strategy on some element of communiation.
But, I also think part of the huge impact your writing h as for us is that when those around us read it, it's 3rd person. It's sort of like a couple needing a marriage counsellor - the 3rd party can remove us from our buttons, preconceived ideas ......... and provide objectivity. And somehow we tend to respect the 3rd person more than we do those close to us. I think it's the lack of clseness that permits this.
you definitely have - looking forward to it!
yikes - I could (as in possiblility, not ability) write for miles here - I've missed so many of the ideas I'd like to explore
one last one is about the fear this disease brings. The possibility of being left alone with nothing and not being able to survive is so real it's palpable, I can almost touch it. I'm so lucky that I have some amazing family and friends and am able to survive financially. When people do talk about ME/CFS, I've said "If I weren't able to survive financially, I'd be living on a couch in my mother's small condo or dead". They squirm and don't want to take it in.
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