Obligation of the Cured

Discussion in 'Fibromyalgia Main Forum' started by shar6710, Jan 17, 2007.

  1. shar6710

    shar6710 New Member

    I saw this phrase the other day in a story about Lance Armstrong. I'm sorry I haven't been able to find an exact quote but from what I gather it is a bit of a rallying cry in the cancer community to encourage survivors to advocate for the cause of curing cancer.

    Lisapetrison's thread about recovered patients got me to thinking that maybe we need to embrace this idea as well.

    I get the impression that those who have recovered merely return to their lives without being advocates for those of us who are still struggling. We all know that most of us who are still ill have little energy to attend conferences, rallies and lobby days.

    Of course I'm not saying there aren't those who do these things for us but I really don't think it is widespread.

    Any ideas on how to get the word out? Or do you not agree with my line of reasoning at all.

    Shar
  2. AllWXRider

    AllWXRider New Member

    I remember reading a story about 10 ppl who had leprosy, they got cured but only one was thankful.

    Helping others find answers and researching what others have tried is a great function of this forum. I try and help ppl, one person at a time. Even when I talk to my doctor, I now know to bring in articles written my M.D. If you change the mind of just one doctor, just think of how many ppl you've helped!

    Your thinking is proper and your heart is right!!!
  3. Slayadragon

    Slayadragon New Member

    My friend's mom seems to have put her illness totally behind her.

    I don't think she has any idea how remarkable (almost _unprecedented_) it is for someone to get wholly well from CFS.

    I tend to think that my doctor is sort of tired of having all his patients feel that way, which is why he was proactive in pushing the idea of writing a book about how I got well _before_ I got well.

    If I do indeed get well, I will make writing the book a top priority.

    If that doesn't work (i.e. no one wants to publish it), I will try to get involved in PR somehow. That sort of thing is not terribly interesting to me at this point of my life, but it is my background.

    Of course, this is all entirely speculative.

    Pretty soon I think at least a few more people (if not _necessarily_ me) are going to get well, though.

    Perhaps if we make commitments upfront, we'll fulfill them once we get to the other side.

    Regardless of whether you believe in God, a deal is a deal.
  4. shar6710

    shar6710 New Member

    I really appreciate the responses and let me emphasize that this is not a phrase that I came up with it is borrowed from the cancer community.

    Allwxrider, I love the pic in your profile! I do not juice but all those fresh veggies make me miss my garden.

    To you, Prickles, Elaine and all the others on this site I know what we do here is important. The knowledge I have gained here is invaluable and it would have taken me forever to have discovered it all on my own. My intention is not to belittle any one's contribution.

    Prickles of course I have been to your site and it is great. I know you do a lot to raise awareness and I believe if and when you are cured you will only increase your efforts.

    Jolie and Lisa I am glad you embrace the idea too.

    Babs, I'm sorry I touched a nerve. I am not trying to "force" anyone to do anything. I'm not even sure how I could.

    I believe I am already my own advocate. I am a member of CFIDS and I participate in their action alerts, writing congressman, the media and others about CFS. I have one of the fundraising websites sponsored by them to help raise money for research. But as I can rarely leave my house and can not even do my own grocery shopping, dusting, vacuuming or laundry, I, like many here, am also limited in what I can do to advocate. I would love to attend the CFIDS lobby day in DC this May but I simply can't make plans like that.

    I do understand what you say about the cured wanting to return to normalcy and put the suffering behind them. And I do know how important every one's efforts here are. But I thought I would ask people to begin to think about how much more they can do for fellow CFS sufferers after they are well. If someone is unwilling or unable then fine but I'm not sure that very many people have even really considered it as an option.

    Respectfully,

    Shar

  5. Slayadragon

    Slayadragon New Member

    Food is the one thing throughout my illness that I've never "gotten right." The more I observe people here though, the more crucial I think it is to getting Truly Well.

    Stormy hasn't convinced me of that herself, but she's been a factor.

    I tend to think that my own particular immune system is messed up enough that I won't be able to get Truly Well without the help of drugs (of one sort or another), but I'm going to start working harder on the food aspect as well.

    I've always been a big advocate of supplements (used with care), but they're no substitute for food.

    It's nice of Stormy to keep coming here and sharing with us.
  6. shar6710

    shar6710 New Member

    Wow, so many responses after I went to bed. I'm not fully alert yet but I'll try to reply.

    Dncnfngrs, yes publicity is part of what I'm talking about. But also I feel that in the USA (and other countries I'm sure) the squeeky wheel gets the grease, also known as funding. We are making progress in that area for research but in the realm of social services the people who are severly ill with this disease really seem to be falling through the cracks. I think more can be done to help them. I'm not sure how yet but hopefully once I'm well and my brain fog lifts completely I'll think of something.

    Donnaeil, I know you work for non-profits and I think that's great. I understand completly what you said about other challenges being greater than our illness. I applaud your efforts. Also you and Stormy are some of the few who continue to regularly visit here after they have recovered and I think that is important too. I just wish there were more.

    Babs, I'm glad I didn't anger you and I think you have added some valid points to the discussion. I still like the phrase and the term "obligation". For me it doesn't carry the negative conotations that it seems to have for you. I don't think this particular obligation is something that can, or should, be forced on someone. Obviously it is something that would have to come from within. People who come here to share, and that includes you, already have it. People like Stormy and Donnaiel still have it. Maybe by bringing this up others will retain it after they are cured and each contribute in their own way.

    BTW Stormy I always felt that I ate pretty healthfully before becoming ill but I am trying to improve my diet even more. I think it can help speed my recovery and hopefully help build my natural defenses. Like Lisa I have to give some of the credit to you.

    Shar
  7. shar6710

    shar6710 New Member

    You're right it is simple and that is the attitude I am talking about.

    Shar
  8. shar6710

    shar6710 New Member

    I'm glad my post gave you more ideas.

    Sounds like your father was a very special man and I'm sure he is proud of you.

    Shar
  9. sydneysider

    sydneysider Member

    I don't know about CFS, but I have not found a valid case of anyone cured of FM, although many are 'improved' or 'better'(not as bad as before). I attend an arthritis foundation run support group. They have around 250 people listed on their books, and none have been cured.

    Cancer is an easily defined disease, where people can tell if they have it or not. A cancer surviver returns to normal health. Also, cancer sufferers, in general, get much more general support.

    I believe our position is far more difficult than those with cancer. Yet we stuggle on, somehow coping, and sometimes not actually coping. Many of us come here to give whatever help we can, despite our own shattered and isolated lives.

  10. Lichu3

    Lichu3 New Member

    Having participated in benefit events in the past for various diseases (MS, lymphoma, etc.), it would be great if there was something similar for CFS. Obviously this disease prevents many of us from being able to attend events (as some cancer patients can still do while they're sick) and perhaps those who recover do not want to own up to having had this disease due to persistent public stigma among other reasons. It's too bad and I don't have any answers for this.

    The severity of the disease makes it very difficult for us to hold rallies in the same ways that groups like ACTUP did for AIDs to attract attention. It would be interesting if we were somehow able to organize a "proxy" rally - i.e. each person unable to go could send someone to represent them.
  11. pam_d

    pam_d New Member

    Great discussion!

    I've had FM for several years, pretty well controlled now (on most days, that is!)

    I had cancer (Acute Myloid Leukemia) this past year, and in remission since summer. Your post prompted me to really think about this, and I think one of my issues is, I can't (yet) think of myself as a "survivor". AML has a very high rate of relapse, compared to many other cancers. Modern science is getting better at treating Leukemia, especially children---St. Jude's has made impressive strides!---but for my type, the odds aren't really in my favor. So it's hard for me to look in the mirror and say "survivor" though my life goes on, I work full-time, have a wonderful husband and daughter, etc...

    This made we wonder how many of us who feel we've gotten a handle FM/CFS...but still kind of wait for the other shoe to drop, so to speak...we just can't get too comfortable with that "survivor" label.

    Which, of course, doesn't mean we shouldn't advocate for awareness anyway...

    I have spent time volunteering at blood drives since my stint with Leukemia...trying to give back for the many times people donated blood and platelets for my many transfusions during my months of treatment. And trying to let people know how important it is to donate if you are healthy and can do so. Just a small way of raising awareness, nothing compared to what Lance Armstrong's foundation does. And what many of us could band together and do for FM/CFS. Prickles website is excellent for this, too.

    Shar, very thought-provoking discussion, thanks!

    Hugs,
    Pam
    [This Message was Edited on 01/18/2007]
  12. roadkill

    roadkill New Member

    I have been feeling "normal" for the last 3 weeks for the first time in 6 years. The first thing I am doing is putting my life back together. I moved back home 2000 miles away. There is so much to recover that i DON'T THINK IT IS WISE TO PLACE MY ENERGY ANYWEHRE ELSE EXCEPT IN RECOVERING MY LIFE. I do feel guilty and bad for not doing anything for those of you who are still suffering and to be honest the feeling of "obligation" sucks the life out of me. Should I devote my newfound energy and life to advocating for those who suffer from FM/CFS or should I try to construct a new life? I want to replenish everything that I lost. Furniture, clothes, pots and pans, knives and forks, relationships, self image, job, a home to live in, . Basically start from the dregs of society. How long should this take me? I estimate(and I hate to say it for those of you who expect me to be doing something now) YEARS!
    For those of you who can't wait for my contribution then I give you this: I got better by finding out my "food sensitivities" through the elimination diet and through blood tests by BetterHealthUSA. I used the highest quality vitamins, probiotics, fish oil, thyroid hormone, progesterone cream, Vit B12 shots. I left bad relationships through the womens shelter. I relied on a spiritual relationship and from the support of the wonderful people at this site. I waited years to be able to afford my return to health and it happened.
    So, there you have it. How to be cured. My contribution. Some of us are not saints.
    [This Message was Edited on 01/18/2007]
  13. shar6710

    shar6710 New Member

    I am so glad you are feeling normal. That is a huge and welcome accomplishment. I would caution you tho that even in the cases of cancer there is a waiting period before a patient is considered "cured". For breast cancer this is five years.

    I think the general rule of thumb for people with CFS is to be symptom free for a year. So PLEASE continue to pace yourself. Enjoy this time, conserve your energy, rebuild your life. No one would expect otherwise.

    But what if there was a network of former CFS sufferers ( and I believe those numbers will continue to grow) who could help you? Maybe they work through their place of worship or through support groups.

    Getting better is not the only area where people need help. They need help while they try to get better. Like Roadkill they need assistance not losing everything. They need help negotiating SSDI, not just advice but filling out the forms, getting to appointments etc. They need help with shopping, cooking, laundry.

    So many of us who are still ill live in isolation with our computers as our only link to the outside and our only tool for advocacy. But once we are better I believe there is so much more we can do.

    I apologize to the other repliers for not addressing them personally at this time. So far I am not having a very good morning, I think I'm trying to come down with a cold or sinus infection. I appreciate all your replies and will return later.

    Shar
  14. bigmama2

    bigmama2 New Member

    I agree with original post that people who recover should make an effort to help current sufferers of cfs or fibro. I understand that when one first recovers form these dd they may want to focus on staying well and rebuilding their life.

    But after a period of time, and good health, I feel that they should give back in some way and help us. This could be in whatever form they choose - from writing ONE post detailing how they got better, or ocassionally posting about their recovery, or posting alot like stormy (and others), or getting involved in awareness, education, fund raising for the cause etc.

    I know if I get better I will definately "give back" and try to help others. How could I not???

    Bigmama2



  15. enjoysue

    enjoysue New Member

    Once I got over my depression I was motivated to help others with mental illness and to help abused women. I have hardly scratched the surface of what I want to accomplish. I say this not to brag but just so you 'know' me.

    I will do everything in my power to educate the doctors in this city or do what I think might help other fibromites. If I ever get well from this I will be motivated to do more because that's just the way I am now. Defiantly not born that way as I am a reserved quiet person by nature. BUT get me riled or mad and watch out!!

    I don't think the term "obligation of the cured" is to force anyone to do anything they don't want to or to make them feel guilty. I see it as a motivator to be the best you can be and to help mankind.
  16. shar6710

    shar6710 New Member

    Sorry it has taken me so long to get back to you, I still feel pretty crappy today.

    Sydneysider, you're right I don't know as much about FMS patients fully recovering and so I won't speak to that. I agree that in may ways our situation is more difficult than cancer patients but I don't think that should limit our contribution once we are healthy enough to help.

    Lichu3, I love your idea about a "proxy" rally. Or maybe we could fill a empty field with beds to signify every CFS patient who was unable to attend because they were too sick to leave their own. And you are right that the stigma of CFS compels people to remain silent.

    Pam your point about waiting for the other shoe to drop is a good one. And yet you are still making a contribution in a manner in which you feel comfortable. You obviously feel the obligation even if your "cure" isn't certain.

    NoFool I understand what you are saying but once again I think many are too focused on only the search for a cure. As I said before, people need help in many other ways too.

    Mcourtney, I'm not quite a buckeye yet as I've only been here for five years. The transformation from a southern magnolia to a buckeye takes longer than that I think!

    Bigmamma2, I think you have the right idea and attitude and I appreciate you stating it so well.

    Enjoysue, thank you for your positive attitude and understanding. The type of motivation you have is exactly what I'm talking about.

    PWCs are really at a disadvantage when it comes to participating in the kinds of public events that are so common for other conditions. That is the very reason we need to rely even more on the "cured". If people who have suffered with this won't even support us and fight for us then why in the world should we expect anyone else to?

    I hope no one takes this as too preachy because I'm really asking questions here, I don't have the answers. I don't know what I would or could do to help if and when I'm cured, but I have thought about it and I will continue to do so, and hopefully this post will plant a few seeds in the minds of others to think about it too.

    Respectfully,
    Shar






  17. Slayadragon

    Slayadragon New Member

    It's nice to see this post. People seem to be feeling hopeful!

  18. enjoysue

    enjoysue New Member

    I hadn't thought of that but it is probably true. I'm sure that would probably be my knee jerk reaction I'm sorry to say.But with me personally I have had this so long and nothing has helped so to my doctors it would probably be a miracle.

    I did have relief for months taking zyprexa but I wouldn't recommend nor sing it's praises to anyone since it added tons of pounds on me which probably is making things more difficult now and I see the prejudice of the doctors which I find disgusting. I'd never really had a weight problem before that and I swear I did not overeat on it which is what the doctor who prescribed it thought. It did not make me more hungry.

    Thanks for the wakeup call for me! I guess as much as we think we are above prejudice we really aren't.



  19. lurkernomore

    lurkernomore New Member

    Wow, this has turned into a very emotionally charged thread! I have read, with great interest, both sides and the reactions have really had me thinking. Muddled as my thinking is, I do still try it now and then.

    While I do not have a definite dx. of CFS I have been stuck with Fibromyalgia now for around twelve years. I call it "the flu that never went away." After some time of feeling like an alien, because no one around me had heard of it and those who were told *why* I was no longer visible at public and family events, I spoke with my rheumy and he encouraged me to form a local support group. And so I did.

    That support group went strong and I formed many life long friendships. But there were also many hurtful moments, such as when the co-founder came to me and told me she was dropping out because she thought we were all just a bunch of whiny women and she planned to beat her illness and go on with her life. (As if we did not all want to do the same.)

    Eventually the support group folded because I simply got too ill to keep fighting for it and locations for meetings were always a problem. So yes, I would love it if those who are well enough and who are up to it would or could advocate for those who cannot. Do I think it is their obligation and they HAVE to? No, but it's just like every other choice we make in life.

    We get so many blessings in life and we can either share them, celebrate them or quietly accept them and revel in them. It is a choice and I personally feel that is the way the thread/question that you, Shar, meant for it to be. I am sorry if it was interpreted in any other way or that some felt you may have been saying people who have been cured really HAVE to do X,Y and Z because of their blessings. We all have choices to live our lives with what we have people. Please, can we all realize that and remain kind to one another in the meantime?