A Question about the Film: Unrest

[TiredBill]

For those who are aware, do you know what symptoms Jennifer Brea presents with in the documentary?

The reason I ask If that I'd like to attend a screening of the film and I'd particularly like to invite the one family member of mine who has never really come around to the idea that despite my living with CFS for over 3 decades and being impacted by this disease the entire time, that this is what's really going on.

I'd like attending the film to serve as a consciousness raising experience for this family member. However, I'm in the subset of those who have CFS who have never experienced joint or muscle pain, nor have GI issues. It has been mainly 30+ years dealing with fatigue, brain-fog, PEM, and related issues.

So, I know in advance that for this *one particular person* if Jennifer Brea suffers from the muscle/joint pains or GI issues that are very common with CFS/ME, then it might be better for me to leave this *one particular person* home. I don't know if I could bear to hear (yet again) that "what these people have sounds nothing like what's going on with you."

I just couldn't bear it.

I hope it need not be said, but I mean no disrespect toward those who suffer from what are probably more typical symptoms than I do. I know CFS/ME comes in many flavors, and no one has it easy.

I'm very much looking forward to seeing this film myself.

Best,

Bill

 

[belize44]

It's a shame that this family member invalidates you continuously! Maybe it isn't so important anymore that they believe you, since you have been suffering for so long, especially. If this person doesn't believe you after all of this time, there is basically nothing that you can do to make it otherwise. In fact, there is probably a good chance that if they viewed this film, they would simply reiterate their ongoing theme, that you don't have what this woman has.

Why is it so important to have this family member's validation? Since they are obviously much invested in not supporting you, maybe you should not include them in your life anymore than absolutely necessary and concentrate on those who have at least been sympathetic. I had to learn this the hard way; I only discuss my health problems with my husband, my aunt, and my niece. Other family members don't ever hear about anything but the most mundane of symptoms. It was a great lifting of a burden when I realized that their opinions don't matter a hoot and that it was more important to believe in myself.

 

[AndyPR]

A quick google gave me this http://blog.ted.com/the-story-of-a-baffling-illness-jen-brea-speaks-at-tedsummit/, which says

when she came down with a sharp fever, which afterward gave way to a number of strange bodily symptoms — crippling exhaustion, hypersensitivity to sound, burning sensations and more. Doctor after doctor told her she was physically fine; tests found nothing amiss. When a neurologist told her she had conversion disorder and chalked her pain up to repressed trauma, Brea’s health only spiraled downhill more. Soon she was bedridden and almost unable to move.

Also this http://www.meassociation.org.uk/201...day-interview-with-jennifer-brea-12-may-2017/ which starts

Jen Brea is lying in a New York hospital, wracked by pain. Her head is pounding, her body barely able to move.

So I guess, to a greater or lesser extent, all of those mentioned symptoms are likely to appear in the film.

 

[Old Bones]

For those who are aware, do you know what symptoms Jennifer Brea presents with in the documentary?

. . . it might be better for me to leave this *one particular person* home. I don't know if I could bear to hear (yet again) that "what these people have sounds nothing like what's going on with you."

@TiredBill From my recollection (keeping in mind my significant memory and cognitive problems), "Unrest" is more a personal journey type of documentary rather than one that presents medical facts and symptoms in an overt fashion. I saw the film shortly after having been dismissed by family members, so this experience was in the forefront of my mind. It no doubt influenced my opinion that the film would not be as successful as I'd hoped in changing the minds of doubting friends and relatives. I am among those fortunate to appear well during the infrequent few hours most people see me. So, I look nothing like the housebound and even bedridden patient "stars" of the film (although I am largely housebound, and have been bedridden with this illness).

Based on my experience, I recommend attending the documentary by yourself, or with those who have proven themselves to be trusting of your reality, and supportive. There will be other opportunities for you to expose others to the film, once you've had an opportunity to evaluate its likely impact on their opinions about you, and ME patients as a group.

 

[Hajnalka]

Hi Bill,

I'll watch Unrest on Saturday night online (can't wait!) and can report back after that.

The only thing I know for sure is that there are no GI issues shown because @TracyD made a joke about this in his great video review (that no movie about ME ever shows them).

Have you seen the kickstarter video? It shows some more symptoms than the trailer. Besides Jen, there are also several other pwme in the movie. I think they're all rather severe. Jen has talked and written about her symptoms before, I think she has severe PEM (collapsing on the floor), problems walking (wheelchair), severe neurological issues. If I remember correctly she said in an interview that flu-like symptoms and fatigue have been prominent in the beginning but turned into more neurological issues. But as I said, I haven't seen the movie, just a creepy fangirl reading everything Unrest-related. But I certainly asked myself the same questions you have.

From experience, my family will react verbatim like this (just in German):
1. Research and Ron Davis are shown in Unrest. Family: "Well, ok, ME is real then, but you can't prove YOU have it."
2. Pwme in Unrest is healthier than I am or manages to do one activity once. Family: "She does this activity every day, why can't you do that?"
3. Pwme in Unrest is worse than me. Family: "Well, you don't need a feeding tube, so you can't have ME."

But I still can't wait to show Unrest to them. It's my best hope to make them understand.

Oh, cross-posted with the others, will go and read what people who actually watched the movie think.

 

[sorin]

It is good that this movie appears now, better late than never! Maybe in this way more healthy people will stop ignoring CFS and will not consider that everything happens in our mind! If we say , nobody believes us, if a movie says the same story maybe there are chances that people will start to understand the truth.

 

[Nielk]

It is good that this movie appears now, better late than never! Maybe in this way more healthy people will stop ignoring CFS and will not consider that everything happens in our mind! If we say , nobody believes us, if a movie says the same story maybe there are chances that people will start to understand the truth.

Because, of course, strangers on a screen should be believed over a trustworthy family member or friend which they have known for a lifetime.

 

[TiredBill]

It's a shame that this family member invalidates you continuously! Maybe it isn't so important anymore that they believe you, since you have been suffering for so long, especially. If this person doesn't believe you after all of this time, there is basically nothing that you can do to make it otherwise. In fact, there is probably a good chance that if they viewed this film, they would simply reiterate their ongoing theme, that you don't have what this woman has.

Why is it so important to have this family member's validation? Since they are obviously much invested in not supporting you, maybe you should not include them in your life anymore than absolutely necessary and concentrate on those who have at least been sympathetic. I had to learn this the hard way; I only discuss my health problems with my husband, my aunt, and my niece. Other family members don't ever hear about anything but the most mundane of symptoms. It was a great lifting of a burden when I realized that their opinions don't matter a hoot and that it was more important to believe in myself.

It would be far too strong to say this person "invalidates me constantly." This person loves me and supports me, they just don't fully accept that I've suffered 33 years with CFS. That is hard for me. But....

I don't require validation, I would like to feel better understood by a loved one.

I'm sure we all have myopic areas in our lives and I'd like seeing the film to help serve as a corrective for this person. I'll survive either way.

Bill

 

[TiredBill]

A quick google gave me this http://blog.ted.com/the-story-of-a-baffling-illness-jen-brea-speaks-at-tedsummit/, which says


Also this http://www.meassociation.org.uk/201...day-interview-with-jennifer-brea-12-may-2017/ which starts

So I guess, to a greater or lesser extent, all of those mentioned symptoms are likely to appear in the film.

Thank you!

 

[sorin]

Because, of course, strangers on a screen should be believed over a trustworthy family member or friend which they have known for a lifetime.

I asked myself many times why family members deny constantly that we are sick. I think this is their form of auto-protection, they want to live in their world, lying themselves that "all this is only in his/her mind", "the doctors found nothing", etc. In this way they are more comfortable. So we should not expect too much from them, we should understand this form of auto-protection.

 

[TiredBill]

If I were you, I'd see it first yourself to pre-screen it before bringing anyone along. If you think it tells your story, then you could always show that person later whenever it comes out on video.

If I were you, I'd see it first yourself to pre-screen it before bringing anyone along. If you think it tells your story, then you could always show that person later whenever it comes out on video.

 

[TiredBill]

If I were you, I'd see it first yourself to pre-screen it before bringing anyone along. If you think it tells your story, then you could always show that person later whenever it comes out on video.

@TiredBill From my recollection (keeping in mind my significant memory and cognitive problems), "Unrest" is more a personal journey type of documentary rather than one that presents medical facts and symptoms in an overt fashion. I saw the film shortly after having been dismissed by family members, so this experience was in the forefront of my mind. It no doubt influenced my opinion that the film would not be as successful as I'd hoped in changing the minds of doubting friends and relatives. I am among those fortunate to appear well during the infrequent few hours most people see me. So, I look nothing like the housebound and even bedridden patient "stars" of the film (although I am largely housebound, and have been bedridden with this illness).

Based on my experience, I recommend attending the documentary by yourself, or with those who have proven themselves to be trusting of your reality, and supportive. There will be other opportunities for you to expose others to the film, once you've had an opportunity to evaluate its likely impact on their opinions about you, and ME patients as a group.

Prescreening sounds like the best idea. That was my plan until I saw in another thread that the film will be shown theatrically here in Santa Monica and Pasadena soon. I was considering inviting Person X who is not a villain, let me assure you all, just someone who has not yet come to enlightenment on this issue.

Thanks!

Bill

 

[TiredBill]

I asked myself many times why family members deny constantly that we are sick. I think this is their form of auto-protection, they want to live in their world, lying themselves that "all this is only in his/her mind", "the doctors found nothing", etc. In this way they are more comfortable. So we should not expect too much from them, we should understand this form of auto-protection.

My father, who was my hero and in my mind the most saintly person I've ever known, had a very difficult time accepting the idea that the son he loved so much---one who he saw as filled with unlimited potential---was going to be (forever?) compromised with a debilitating illness.

He struggled with this from a place of optimism, love, and perhaps over-compassion. He was a good man and he gave a total support. I miss him!

Bill

 

[TiredBill]

Hi Bill,

I'll watch Unrest on Saturday night online (can't wait!) and can report back after that.

The only thing I know for sure is that there are no GI issues shown because @TracyD made a joke about this in his great video review (that no movie about ME ever shows them).

Have you seen the kickstarter video? It shows some more symptoms than the trailer. Besides Jen, there are also several other pwme in the movie. I think they're all rather severe. Jen has talked and written about her symptoms before, I think she has severe PEM (collapsing on the floor), problems walking (wheelchair), severe neurological issues. If I remember correctly she said in an interview that flu-like symptoms and fatigue have been prominent in the beginning but turned into more neurological issues. But as I said, I haven't seen the movie, just a creepy fangirl reading everything Unrest-related. But I certainly asked myself the same questions you have.

From experience, my family will react verbatim like this (just in German):
1. Research and Ron Davis are shown in Unrest. Family: "Well, ok, ME is real then, but you can't prove YOU have it."
2. Pwme in Unrest is healthier than I am or manages to do one activity once. Family: "She does this activity every day, why can't you do that?"
3. Pwme in Unrest is worse than me. Family: "Well, you don't need a feeding tube, so you can't have ME."

But I still can't wait to show Unrest to them. It's my best hope to make them understand.

Oh, cross-posted with the others, will go and read what people who actually watched the movie think.

@Joh I appreciate any feedback you have after seeing the film. I better refresh my memory on the Kickstarter clip (you know how that goes ).

Bill

 

[MEPatient345]

I don't think she speaks about gastro issues specifically. She has all over significant muscle weakness that causes her to crawl on floor and stairs and lay prone for much of the beginning of film. Later in film, it shows her excitedly attending a parade in a wheelchair and cheering. When they leave and by the time they get home, jen is curled in a fetal position in pain on their porch, and misses whole afternoon of having guests to the house. It's not clear if pain is in her head or body. She's unable to communicate well through the episode. I thought this showed PEM really well! I thought film showed the range of symptoms including the way we sometimes manage to do stuff, or have good days or weeks, but still must be super limited in total activity. Jen conducts all the interviews in film from bed, and is filmed in bed a lot. It's a very moving film.. I hope you and your family enjoy.

 

[TiredBill]

Because, of course, strangers on a screen should be believed over a trustworthy family member or friend which they have known for a lifetime.

While it seems absurd, I think this highlights the power of film to re-shape attitudes. Film is a powerful medium.

Bill

 

[slysaint]

Have you listened to her interview in NZ?
http://www.radionz.co.nz/national/programmes/saturday/20170812

Might give you a better idea what to expect in Unrest.

(she does also talk about the fact that she did get better after the fever etc which I'd not come across before)

 

[TiredBill]

I don't think she speaks about gastro issues specifically. She has all over significant muscle weakness that causes her to crawl on floor and stairs and lay prone for much of the beginning of film. Later in film, it shows her excitedly attending a parade in a wheelchair and cheering. When they leave and by the time they get home, jen is curled in a fetal position in pain on their porch, and misses whole afternoon of having guests to the house. It's not clear if pain is in her head or body. She's unable to communicate well through the episode. I thought this showed PEM really well! I thought film showed the range of symptoms including the way we sometimes manage to do stuff, or have good days or weeks, but still must be super limited in total activity. Jen conducts all the interviews in film from bed, and is filmed in bed a lot. It's a very moving film.. I hope you and your family enjoy.

Thank you for the details. This makes me think I'll go, but leave Person X at home. I've never been wheel-chair bound and I think the comparisons might prove counter-productive. I can alway buy or rent it if my thoughts change after seeing it myself.

I appreciate it!

Bill

 

[Gingergrrl]

I will be seeing Unrest on 9/29 and will be able to tell you exactly which symptoms are in the film then (although it sounds like you already got some great feedback @TiredBill).

I am very lucky/blessed that I've never had family or friends doubt the severity of my illness (although I had several negative experiences with doctors in the last 4 yrs who did not believe me especially re: MCAS/allergic reactions and the severity of my breathing difficulties).

 

[anni66]

Thank you for the details. This makes me think I'll go, but leave Person X at home. I've never been wheel-chair bound and I think the comparisons might prove counter-productive. I can alway buy or rent it if my thoughts change after seeing it myself.

I appreciate it!

Bill

I am in two minds whether to take my brother in law. For his idea of light hearted joke he casually asked my daughter ( then aged 15) when she was going to stop being a " spazzy". Obviously he had not tried to educate himself re her illness. She calmly looked him in the eye and told him whilst she had the advantage of youth on her side, she may never recover to be as she was previously. He' s not seen her struggle, nor appreciated the toll family get-togethers have on her.
Hopefully this film has the power to portray reality to counter the narrative that has held sway for so long.