Tag Archives: arthritis

Too positive to be part of Invisible Pain group

 

Before I start, let’s get facts straight so I don’t get bombarded by “you healthy idiot don’t know what you’re talking about” – I was born with arthritis which bent my right leg under 90 degrees and it has caused my ligaments to stiffen up with any hint of cooler air, or very hot one.  On good days that means I only ache all over the body and suffer stiffness in the mornings, on bad days my leg joints swell up to the size of a football (not kidding) and I can’t walk more than few minutes at a time without help.

Anyone interested to learn more about living with arthritis, can read it HERE (opens in separate window). Probably also explains a lot behind my attitude.

This is going to be “What I learned from the Facebook today”!

And all this, because of THIS image:

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So, ten things I learned.

  1. I am too positive for groups that deal with Fighting Invisible Pain (not specific group).
    Turns out these groups are only for those, who want to share their experience how hard life is. And I had enough of this pity party, so when this image popped up, I agreed with most of it, except the part that choice is something no-one can’t take away from you. WRONG! You are out! You are so out!
  2. If it is “we want to wallow”, then they really gang up on you should you want to give an opinion that doesn’t  match the mood of others. 
    And I mean, they gang up! It’s “us versus you now”! You are heartless, you are too healthy, you are lecturing us how to live our lives!
    All this, because after short response, they kept rigging it and twisting my words, so I wrote a long response and ohmygodandmightyhorses! As if I became a bigger target to trash on! And all I disagreed on the image was that “there is always a choice”, even if life is in pit. Which was taken as “you ugly person don’t know what you talk about” and “can’t you give the poor woman space?” and “I can’t choose to dance, because I’m in wheelchair” (<- yes, you can choose if you want. If you don’t, that’s a different question).  The worst was that I became the “no empathy towards the sufferers!” followed by a long triad of unworthy-of-this-space stuff. How the heck did it go from saying you always have a choice to, uh, what? Empathy = as I should nod with you and agree that poster of this should sit in the corner and tell themselves that or let their family convince them that just because they are physically/mentally ill, they have no choices left in their life? Or disability means they should surrender to abuse and whatnot because that’s what they decide to inflict on themselves because of their disease? (that’s an example, by the way as that’s not what her blog actually indicates) Her blog, by the way, can be found Here.
  3. If others mention, for clarification I guess, what they suffer of (as in what causes their pain), then if you have different opinion and use the same message up build, you can be slammed hypocrite.
    ’cause, imagine that, if you are in pain, you all deal with it the same way. No exceptions. Yeah, the ache in my bones – I must be faking it indeed, so I’ll pop in few more placebo painkillers. The inability to keep a straight thought – I’ll square it up immediately, just to prove you right. <- That’s sarcasm for you, for clarification, because I feel like it after what I just read from your responses.
  4. There is “positive thinking cult” < apparently, I’m part of it. Didn’t even know it, but unless you do the wallow-with-us, then you’re part of it. What that has to do with having choices, I don’t honestly know as, as much as I’m aquainted with the basics of the “Positive thinking philosophy (the Osho philosophy thing?)”, I have never liked it as it is nothing more than deceiving yourself and others by hoping for something that will never happen because you put no effort in it and you decided to create yourself illusionary realm versus the reality by ignoring it. Wasn’t it Peirce, who first came up with that theory? Or was his about categorizing what you liked?
    Actually, I know that “cult” – they came in our hospitals often too, asking us to close our eyes, think of good things and then asking if we felt better. Never better after fantasy trip to mushroom forest :).
    However, having realistic look on your life and dealing with it according to your abilities should not be seen as impossibility and you shouldn’t make others feel bad for trying to cope with the limits they are in. That attitude came from my doctor and the youth group I was part of, which taught the parents how to deal with a child, who couldn’t do everything. “You’re not dead, deal with it!” was our shout-out. We saw a lot of children, who were let to drown in their own sorrow for life they would never have and parents, who mourned with them.  It is normal to mourn losing yourself, but after the mourning period is over, it is time to look it straight in the eye and take it day by day.  I was lucky we had it – they taught us how to deal with our problems (individual limitations based on our disabilities), how to recognize the signs of our moodswings, how to drag ourselves through and when to search help, etc. A lot of which  I don’t see in US communities, where they literally love to drown in their own sorrow.
  5. People don’t understand that “you always have a choice”  isn’t the same as “good attitude”. That, apparently if you say that, then it means “you deny that chronically ill can feel negative feelings”. <- how you deny anybody from feeling something is beyond me.  How you stop having a choice is also a puzzling concept. Just because some pieces of your answers fell away doesn’t mean you’re question doesn’t have an answer. But no, if you are ill, you no longer have choices it seems. Somebody else is to blame for the stupid combo life handed to you in form of your body. You let go, you are a shell others can play by their music.
    Having a good attitude – I don’t think “good” has a definition here, for it has no opposite to define it by.  But apparently, having a choice means you are thinking positively? I don’t think those two are related at all, otherwise you wouldn’t be able to make decisions, which will have negative impact, but are necessities to make, but do not include positive even one bit. That’s University level philosophy, which man was it, can’t remember right now… William James, maybe?
  6. Half of the people most likely don’t even get what you are saying in plain English. “You can’t stop being disabled by deciding to have a “good attitude”!” (from the image below) – good attitude won’t cure you. Never doubted that and  I think the owner of the blog doesn’t either.
    However, you can change how you deal with the problems in your life that this causes – will you try to solve them or will you sit back and only snap “I can’t”! Nobody can help you if you don’t try yourself. The fact that the only thing they picked out of that image is THAT and decided that my comments meant I believe that crap of “good will will save you” is bullshit (my blog, I can say it). I was talking about your attitude towards dealing with your daily life, they talk about miracle cures. And that made me part of the “positive attitude cult”.
  7. Apparently body limits is a wall a lot of people can’t see past of. Including mental illnesses. They make it the center of their universe. Pointing that out, is BAD. Pointing out that it is part of you, not what should defines you, is BAD.
    But it kinda makes me understand better the western concept that person can only be defined by one concept instead as a result of many different concepts; why in western world you are either hetero or gay, black or white, sick or healthy , and why anything in-between confuses them. That you can be both, that you can change from one concept to another, that you can appreciate more than one type of culture, music, religion, etc. So all I really learned from that long “dialogue” was that I consider myself as part of western world, but in truth, I am not as I can’t see past your limited way of seeing things. Everything has several aspects while to you – there only is one definition and that’s it. So, if you are depressed, then everybody should avoid you, if you are missing an arm, then feed you by spoon? That’s what echoed through  a lot. That if you have some disability, then you should be treated like exception from society when you still are part of it and contribute. That it is a symbiotic relationship, not give or take. Yet to US, it is only “you take”?
  8. I lack of empathy if I do not choose to pat you on your head and say “oh, you poor baby” if you are feeling bad, because I know from personal experience that it is not the end of the world and refusing to partake your pity party is BAD.
    Because if human wants to wallow in their self pity, then you must let them! You know, because self pity isn’t addictive to your brain as the latest studies agree on, so let me be!  By the way, self pity is addictive and the reason why so many people feel the need to wallow up and feel highly confrontational if you call them out on it.
    Yes, I refuse to be the cheerleader to your pain, because why should I treat you any different? I can offer you painkillers if you need them, give you an extra hour, walk slower – that I can do! But I will not treat you like a baby unless you are one! “Recognize my pain” – and then what? You jump to their faces, because they don’t understand what it feels like? Did you ever stop thinking that they don’t have to know what it feels like! That it is GOOD that they don’t know shit about this? I wouldn’t wish it to my enemy, least to anybody I know.
    Tell me, does it help you if they do the whole “I am so sorry you feel pain!” routine or do you feel better if they say “Ok, I’ll pick you up earlier so we can take it slow.”. I know which one I prefer – that they consider my needs, but don’t give in on my wants when it would clearly work against me. Or when you have friend with a depression, then instead of “ok, I’ll let you be”, sometimes it works better to “pick up pizza, your place by six”, which by the way, was awesome as it left me no room to cry myself to stupor.
    Arrogant a bit? Damn straight I am, because I don’t want to pity you or you to pity yourself – that should have no place in your life -, I want you to learn how to live with your crap so you can feel better about yourself needing others less. Or if you are downway road to needing them more, then so that you both are comfortable in each other’s company. Its often those around us, who suffer through our pain more, because they don’t understand it. And it should be ok to tell them they don’t have to know or feel guilty for not knowing and all they need to know is how they can help should you need them. But instead, I got loaded how “everybody should be aware how I feel” – hell no! You’re grown up person, then have enough “empathy” to understand how you affect them too! Pain – express it so they know to take your needs in consideration, but the expectations for random people to know an encyclopedia worth of diseases…
  9. Pointing out that instead of telling people with disabilities that they can’t do something, perhaps it would be more productive to you both, to help them with it or search a short/long term solution instead would be better. BAD, BAD, oh so BAD. Who has ever been part of therapy, knows how easy it is to say “I can’t.” or “Leave me alone, can’t you see I’m ‘excuse’ and ‘excuse'”. They stop participating if they are left alone and by this they make their own conditions worse. All because they expect their conditions to heal up somehow and if it doesn’t, or doctors tell them it never will, they give up, because why fight? The therapy chronically ill get is not meant to cure you. Never was. It is meant to make their life livable and get you over the hard point of your life once more. Get you out of the depression you feel for having to depend more to your family and friends.  Yeah, it’s hard not to get up in the morning without someone pulling you up, because you fucking can’t move. Story of my life. Yeah, anyway.
  10. That it is easy to say “You don’t know what I’ve been through…”, when, excuse my irony, most likely I do, because we have the same illness and get the same treatment, experience the same things, which is why I am in the community, seeking people like me…
    was…
    and you know, because if you don’t cry while being in pain, then you don’t know what it is like… I guess I really don’t know what it is like for you, ’cause to me it has been a norm since birth, not something  I got diagnosed at best years of my life… and crying over it seems kinda pointless if it doesn’t change anything – ‘s not as if it stops hurting, does it? And no, that’s not “positive thinking” – that’s fact of life I live with.

 

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It really is about choices. So what if your new diagnoses left you crying in your pillow and forces you change the way you saw your future? It angers me to see how new ones test their family’s support. Unless you are really crippled, pack the act and learn how to live with it. Some of us have lived with it every single day of our lives and you wouldn’t even know it. It isn’t death sentence, God could have given you something far worse and even those people still live to their fullest. It’s just new to you and no, it never gets easier. Perhaps just slightly more demanding. But you don’t have to live it out on others or feel that with this you have earned the right to turn them in your slaves.  You need help – you ask for it, but if you can do it yourself, do it! Maybe we don’t run marathons or sometimes getting out of bed is damn hard, but the reality is, disabled only means you need to do things differently and you need to try harder to pick up that sock from the floor. Or use a stick to rise it up where your hand is. Or kick it under the bed for the Sock Troll to eat it up. Just don’t give me the crap about “I can’t”.  I am disabled too and my life ain’t roses and lilies either. So I know you fucking can. Not like healthy person does it, but how it is comfortable to you. And sometimes, that Sock Troll can be really hungry.

 

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