I think it is important with a chronic, progressive illness, that you don't GET OVER grief. It is ongoing. Everytime there is a major set back, it hits you in the gut again.

Bob, yes you are correct. People do not see what is obvious.

I was invited to participate in a walk for a different disease cause, one which gets a lot of press. (And I didn't like the name of the walk...it just sounded self centered to me)

I have a family member who is a survivor.....she has chemo PN...she does not understand that I can not walk that far, for one thing, my feet won't hold out and with the AFOs I would likely cause some damage for that distance, and secondly, my blood pressure won't stay up for prolonged upright posture.

We both have PN.

She waves her hand and says, 'It's nothing'. Her PN is truly, nothing, and her other health issue has for now, been treated. Now and then her foot tingles, that is HER experience with PN and she does not understand or want to see that it is not MY experience with PN. Her doctor told her what PN is, and said with PN, and he did not make the differentiation between toxic chemo PN and progressive systemic PN, would be a self limiting condition. She has cancer to worry about, and doesn't need to worry about a self limiting PN...To her, ALL PN is what her doctor told her about PN. ALL she understands about PN, regardless of what information is out there, is what she needs to know about HER OWN PN. She is centered on her own experience. That is her coping style and always has been.

Not that it isn't hanging over her head for recurrance, but it had a reason, and there was a treatment....unlike having something that has no reason, no etiology and no treatment. That said, I am still concerned about her prognosis.

This is how I cope with people who can't see.

When I go for a walk, I simply, silently fall behind, and do not say a thing, and I take the time to enjoy the scenery they miss.

If I can't pick something heavy up, I leave it, saying nothing. I have given up 'explaining', I just leave it undone, and refuse to feel guilty for those who refuse to see the obvious.

I have had doors dropped shut in my face, it happens.

People tend to want to see us, as they have always seen us....strong, active, happy, determined, goal orientated. When they see us as weak, sednentary, sad, and lethargic, they do not blame the disease, they tend to see it as a lack of initiative on our parts. It is good to be able to hash these things thru and it may take a professional, but be careful, if you go to a professional counselor who has NO idea what serious chronic illness is, he/she can do more harm than good.

I know my husband is frustrated. And each new test, just as the one I just had, comes back with an unexpected abnormality....a new divergent path which can take months to explore. Even my GI who was convinced he found the cause of a recent issue, was stunned at what he did find....so, now a whole 'nuther, road to go down.....frustratingly, one I had mentioned years ago...and, again, no one listened.

They don't think zebras until they have exhausted every possible breed and color of horse....it takes so many years.

It is fine to think positive, I keep thinking positive, however, I am also dealing with grief. If you have real illness, with real functional capacity dimunition, you can't help but deal with grief. I think to say just 'think positive' without dealing with anger, sadness, resentment, is simply not the way to really cope with the issue. I don't think this author was saying that at all. I think she was saying, what Elizabeth Kubler-Ross said in regard to terminally ill patients, that it is a process. Having any chronic progressive illness, especially in the stages where work capacity and functional capacity is declining, will cause, the SAME reactions as Kubler-Ross discussed in her book.

If you have a progressive chronic disease and feel none of what Kubler-
Ross and the author I quoted mentioned, then, I question if one is stuck in denial, or how sick one really is.

It is especially difficult for folks with limited financial means, who, just can't take off on their dream trip, or go fulfill the goals of their lifetimes, or for folks who have lost insurance, and we have no national insurance program. Kudos to those who are fortunate enough to have the means, for those with limited physical or financial means, the goals have to be redefined, and adjusted to age, disease state, function, finances and the impact that our disease has on others.

Acceptance for some people simply means they will have to take medication, for others it means they must acquire a wheelchair.

All people with severe chronic progressive disease, and SOME, not all PN, bears a resemblance to MS, muscular dystrophies, ALS, Multiple System Atrophy, Parkinson's and other neuromuscular disease is many ways, if mentally adept, go thru the stage of grieving, multiple times over decades...it isn't done once and for all, it is done over and over again.

I understand Bob, that many folks with PN, do not understand that PN is not one entity, but a plethora of entities from a mononeuropathy, to full flegged systemic disease, and to be insensitive to this, is just that, insensitivity.

As I posted that video, in the Sensitivity Thread some people can only see what they look for, and miss the obvious, even though it is right in front of them, as they simply, positively do not see past their OWN experience, nor what they regard to be their OWN font of knowlegde.

The longer I have had this disease, the more miles I have walked in other's shoes, and the more I have come to comprehend, that even the most motivated, positive people with real chronic disabling conditions WILL have to make adjustments.

That is what this article said, adjust your expectations, and enjoy what you CAN do.

This thread was meant to illustrate that the coping process for chronic disease. It does not speak to the fact that some one who perceives themselves as more motivated and positive than other PNers, has a better quality life.

Positivity is a good trait, it does not confer immortality.