How much should we tolerate before speaking up?

[Boule de feu]

How much should we tolerate before speaking up - comedian joke turned sour

Viewers hit back at comedian Denise Scott over autism joke:
http://www.heraldsun.com.au/entertainment/special-reports/viewers-hit-back-at-comedian-denise-scott-over-autism-joke/story-fn856r6n-1226035189183


We were just having a discussion on another thread about a CFS cartoon that appeared in a major newspaper.

It was suggested not to react. We were probably overreacting since the cartoon was probably not meant to insult us. It went as far as saying that people might get the impression that we are whiners, always complaining for nothing.

I'm wondering if we missed an opportunity, here. Why are we so afraid to say what we think? Are we afraid to be judged by others? Afraid that our illness does not look legitimate enough?

Autism and celiac sufferers did speak up. They did not hesitate to react.

I think we need to accept that we have a shitty name for a disease but it does not make it less real.

 

[eric_s]

I think it's very important that we speak up. Not that we haven't in the past, but we must ask ourselves how to do it better. It does not necessarily have to be in a confrontative, aggressive way, it should always depend on the situation, but we must put our point of view out there and the public must know we exist and what the situation is.

I have always thought that we need good organisations to do that for us. What you or me write as a commentary to an online article or on a message board is ok, but i don't think it has that much of an effect. It's just one individual and no reader knows who you or me are and therefore it's easy to dismiss.

I urge anyone to join and support organisations or found new ones, if needed. We need credibility and size, i think. The information must get out and when people see it they must believe it and take it seriously. I think especially in a case like ours where there are no visible signs that can't be denied, like people dying, for example, people will only truly believe, if they can see "Wow, there are 200'000 people and that list of doctors and professors behind that message, this must be for real".

 

[Leslie]

I think it's very important that we speak up. Not that we haven't in the past, but we must ask ourselves how to do it better. It does not necessarily have to be in a confrontative, aggressive way, it should always depend on the situation, but we must put our point of view out there and the public must know we exist and what the situation is.

I have always thought that we need good organisations to do that for us. What you or me write as a commentary to an online article or on a message board is ok, but i don't think it has that much of an effect. It's just one individual and no reader knows who you or me are and therefore it's easy to dismiss.

I urge anyone to join and support organisations or found new ones, if needed. We need credibility and size, i think. The information must get out and when people see it they must believe it and take it seriously. I think especially in a case like ours where there are no visible signs that can't be denied, like people dying, for example, people will only truly believe, if they can see "Wow, there are 200'000 people and that list of doctors and professors behind that message, this must be for real".

My "ex" daughter in law just passed away suddenly, in her sleep (?), she had told me she had Fibro and CFS.....

 

[eric_s]

That's horrible. I didn't want to say this doesn't happen, sorry.

 

[Leslie]

That's horrible. I didn't want to say this doesn't happen, sorry.

Who knows if this was related......no one knows enough about this "disease" to be sure of anything.

As a nurse I did research....a lifetime ago it seems, and literally everything is so subjective.
Basically, we all have some symptoms in common, some (of us) have more than others, some have symptoms that are worse than others, some can get out, some can't, the list goes on.
We do know we are tired beyond the normal, have symptoms that sometimes seem unusual to any particular disease......you all know I could go on. What I try to do is think that I do have today. It is not the best "today" I have ever had, but I am thankful for the things I have been able to do in my life so far. I would love to work, to travel, to go out to lunch with friends.......but I can't. I have found that my dogs are my blessing, and I volunteer to foster little dogs, one at a time, and feel that at least I can contribute.

Off the soapbox now, I am tired!!

 

[eric_s]

I understand it's important to make the best of today, so that we can spend the time in a way that is more or less ok, but i think we should not fall into the trap to let people tell us the goal is to manage ME/CFS and live with it. We want and derserve better and should push for this.
What other group has been waiting for so long, let alone a group of our size? And what other disease gets so little funding? It's just not right and has to change.

 

[justinreilly]

I think it's very important that we speak up. Not that we haven't in the past, but we must ask ourselves how to do it better. It does not necessarily have to be in a confrontative, aggressive way, it should always depend on the situation, but we must put our point of view out there and the public must know we exist and what the situation is.

I have always thought that we need good organisations to do that for us. What you or me write as a commentary to an online article or on a message board is ok, but i don't think it has that much of an effect. It's just one individual and no reader knows who you or me are and therefore it's easy to dismiss.

I urge anyone to join and support organisations or found new ones, if needed. We need credibility and size, i think. The information must get out and when people see it they must believe it and take it seriously. I think especially in a case like ours where there are no visible signs that can't be denied, like people dying, for example, people will only truly believe, if they can see "Wow, there are 200'000 people and that list of doctors and professors behind that message, this must be for real".

I agree! Here is a thread on mecfsforums.com on starting a new advocacy org. Everyone please join the conversation! You have to sign up there to check it out. Keeping it on one forum for now so the discussion is focussed (but of course you are free to start a thread here on PR too). We desperately need more genuine ME advocacy orgs!
http://www.mecfsforums.com/index.php/topic,5704.0.html

 

[Boule de feu]

My doctor told me
- to get used to it
- that it will not go away
- that there is nothing we can do about it
- that I need to learn to pace myself and rest a lot.

He is treating each symptom individually when they become too bothersome. When I get too sick, he runs the same tests
over. The results are always the same.

So, my life is pure hell right now.
I never know how I will spend the day until it hits me again and I need to go back to bed.

The FM group? They can get a diagnosis but can't get treatment.

 

[eric_s]

I had/have such a doctor too. He at least accepts ME/CFS and how you current condition is, so that's still better than a doctor that will come up with some strange ideas.

But i don't like the approach of telling people there is nothing one can do at all. I think they should always tell you that sooner or later a treatment will be found. And i think a doctor should even direct a patient towards ME/CFS groups, the ones for support, but also the ones for research, so all the patients can help with advancing things...

Dr. Komaroff says it very nicely in one of his presentations: Sooner or later every disease will be solved (not his exact words, but that was the meaning). But if we believe it's impossible and resign it will take much longer, so i think that's a bad thing for a doctor to say.

Good luck Boule de feu.

 

[justinreilly]

But i don't like the approach of telling people there is nothing one can do at all. I think they should always tell you that sooner or later a treatment will be found. And i think a doctor should even direct a patient towards ME/CFS groups, the ones for support, but also the ones for research, so all the patients can help with advancing things...

Dr. Komaroff says it very nicely in one of his presentations: Sooner or later every disease will be solved (not his exact words, but that was the meaning). But if we believe it's impossible and resign it will take much longer, so i think that's a bad thing for a doctor to say.

Good luck Boule de feu.

I agree. Doctors say that there's nothing you can do all to often. They should at least say that "I and any other PCP can't or won't do anything for you because it's not cost-effective. There are a very few doctors in the world who specialize in this and they could help you to some degree, but they are expensive and hard to get to see. Here are some good books to read. You can educate yourself and hopefully find some techniques and treatments to improve your health."

That is a great point that every disease will be understood and substantially treated or cured at some point and let's work to bring that day closer to us.

 

[justinreilly]

My "ex" daughter in law just passed away suddenly, in her sleep (?), she had told me she had Fibro and CFS.....

Leslie, I am very sorry for the loss of your former daughter-in-law. May I suggest you submit her name to the registries of patients who have passed from ME (if you think it was a substantial cause, which I think it usually is in a premature death). Getting out the proof and awareness that ME can kill is extremely important for us. In my mind, it would also be a nice way to honor her. Just my thoughts for what they are worth. That is obviously a very personal decision.

 

[Boule de feu]

I had/have such a doctor too. He at least accepts ME/CFS and how you current condition is, so that's still better than a doctor that will come up with some strange ideas.

But i don't like the approach of telling people there is nothing one can do at all. I think they should always tell you that sooner or later a treatment will be found. And i think a doctor should even direct a patient towards ME/CFS groups, the ones for support, but also the ones for research, so all the patients can help with advancing things...

Dr. Komaroff says it very nicely in one of his presentations: Sooner or later every disease will be solved (not his exact words, but that was the meaning). But if we believe it's impossible and resign it will take much longer, so i think that's a bad thing for a doctor to say.

Good luck Boule de feu.

THANKS!

Oops! I forgot the worst comment he ever made to me:
You will live up to 88 years old but you will get worse before getting better.
You might never get the quality of life you once had.

In retrospect, this comment is not so bad, but I had no clue what ME/CFS was when he made it.

 

[Boule de feu]

I agree. Doctors say that there's nothing you can do all to often. They should at least say that "I and any other PCP can't or won't do anything for you because it's not cost-effective. There are a very few doctors in the world who specialize in this and they could help you to some degree, but they are expensive and hard to get to see. Here are some good books to read. You can educate yourself and hopefully find some techniques and treatments to improve your health."

That is a great point that every disease will be understood and substantially treated or cured at some point and let's work to bring that day closer to us.

I spent five years of my life educating myself about CFS.
It is a pity that sufferers need to figure it out by themselves.
It would have been nice to leave my doctors' office with a few good books
instead of being confronted to nasty Mr. Internet.