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10/16/2008

Endometriosis Blog: VIDEOS Of Husband's Grief Over The Loss Of His Wife Who Had Fibromyalgia. These VIDEOS Could Help Many People!!!

I just came across this moving video. I will forewarn you before you watch it that it is very emotional. I am crying as I write this post. The video is a man talking about the loss of his wife. His wife had fibromyalgia. This man is trying to create awareness about fibromyalgia, chronic fatigue syndrome, and chronic pain.

This video is very powerful. Again, I will caution you that this video may stir up painful emotions for viewers. However, I feel compelled to feature it here because I believe this widower really captures the tragedy that an illness such as fibromyalgia can cause.

In the video, you will hear this man make reference to a New York Times article that questioned whether there is such a thing as fibromyalgia at all. This article was very upsetting to me and to many fibromyalgia patients (and the doctors who treat them and believe fibromyalgia is VERY REAL)!!

I believe this man's compelling video is a chilling but loving account of how fibromyalgia affected his wife. I see it as a tribute to his wife... by a man in severe emotional pain who is working hard to create awareness about the scope of illnesses like fibromyalgia and chronic fatigue syndrome!

I urge you to watch this video and listen to this man's story of what his wife went through. His wife's story is chilling, sad, and tragic... but he is working to share her story to help others.

After the video, I will include a link to the New York Times article he referenced that upset so many people. Then I will also post the letter I wrote to the New York Times when that heinous article came to my attention.

This man asks that viewers of this video write to Oprah in an attempt to get this story aired on her show.

Please take 9 minutes and 54 seconds out of your life to watch this compelling video. It may bring you to tears as it did me. However, I believe it is worth watching. I admire this husband's tenacity in working to create awareness about the profound impact illnesses such as fibromyalgia can have on patients. This video gave me chills.

I was unable to get the embedded code for this video to work but if you simply click on the hyperlink below, you will be routed to this powerful video:

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VIDEO --- "Fibromyalgia - Lisa's Story".

Here is the compelling video from Lisa's husband... "Fibromyalgia - Lisa's Story"

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Here is a link to the terribly inaccurate New York Times article questioning the existence of fibromyalgia:

New York Times article on fibromyalgia


Here is the letter to the editor of the New York Times that I sent in February 2008:

From: Jeanne
Sent: Friday, February 29, 2008 11:10 PM
To: 'public@nytimes.com'
Cc: 'nytnews@nytimes.com'; 'managing-editor@nytimes.com'
Subject: OUTRAGE over "Drug Approved, Is Disease Real?"

ATTN Mr. Clark Hoyt, Public Editor

Cc: News Department; Managing Editor

I just learned of a January 14, 2008 (front page) New York Times article called “Drug Approved, Is Disease Real? I am astonished to have read this troubling, hurtful, inaccurate article. I was shocked that the New York Times article questions whether fibromyalgia is real!

The article’s portrayal of fibromyalgia as a fictional illness is appalling!

Can you imagine if the NYT wrote an article about cancer being imaginary? I have fibromyalgia and I have had cancer; trust me that fibromyalgia is as real as cancer. How many letters and calls would you be flooded with if cancer were painted as a fictional illness? Can you imagine the uproar?

This article drags millions of fibro patients through the mud with its inaccuracies. Fibro patients have enough trouble without people believing them to be fakers. Articles like this get read by many people. They read the “big bad pharmaceutical company” slant of this article and are left to believe that any fibro patient they meet is faking, lying, imagining, etc. This is very damaging to people already suffering so much. Fibro patients need MORE support from family, friends, and co-workers… not LESS!

Let me be quite clear. I have nothing to gain by “saying” I have fibro. I don’t receive any money from pharmaceutical companies (though they get plenty of mine)! I have been known to complain about the corruption of pharmaceutical companies, the expense of their drugs, and their ridiculous profit margins. I am not a lobbyist, pharmaceutical sales representative, or a person who stands to gain financially in any way by speaking out against this heinous article.

By the way, the reason I have identified myself as a fibromyalgia patient is that my doctor diagnosed me with it. He then referred me to a specialist (rheumatologist) to confirm OR rule out fibromyalgia. The specialist confirmed that I have it.

It is excrutiatingly painful! Cold weather, in particular, aggravates my fibromyalgia symptoms. Where I live, we had the pleasure of sub-zero (Fahrenheit) weather in the last few days (I am not referring to wind chill either). Temps like these cause unspeakable pain for me. There are times it hurts to give my husband or child a hug. Sitting in a chair for too long can result in increased pain. The list goes on and on...

An article that sets out to discredit a valid illness (recognized by many physicians, despite what was implied by the small number of apparently cherry-picked doctors that were quoted in this article) is reprehensible. This article is medically inaccurate and, quite frankly, just plain irresponsible journalism.

The article was offensive and potentially has hurt/will hurt many lives.

No one is more game to read an article proving the greed and corruption of pharmaceutical companies than I am. However, slamming an entire illness that’s well-recognized by most health care professionals hurts the millions of patients with this very real illness. Slam pharmaceuticals all you want! Please just make sure when you do so that the article is properly fact-checked. The doctors you quoted as insisting this illness is not real are in such a minority. Why spin a story to fit a category (i.e. “beat up the pharmaceutical companies”)? Why not just present the facts? The doctors’ opinions you quoted are not the norm.

I strongly believe the New York Times should print an apology and a retraction. Also, it should run articles with accurate information from doctors whose views aren’t so obviously out-of-step with the vast majority of doctors.

When someone is chronically ill, every day is full of challenges. The fibromyalgia patients I’ve had the privilege of meeting are better than most at “adapting” to adversity, illness, and pain… despite what the doctor you quoted said.

Please consider using more care before printing articles that will be read by many in your widely-circulated newspaper.

Thank you,

Jeanne

My thoughts are with this man who is grieving the loss of his wife but also rising up to create awareness and foster understanding of fibromyalgia, chronic fatigue syndrome, and chronic pain!!

His video will help others. Perhaps he'll even get to discuss what happened in his wife's situation with a much wider audience such as Oprah's.

This man's courage in the face of such tragedy is helping other people to comprehend how profoundly fibromyalgia and related illnesses can affect patients and their loved ones. I believe he is doing a great service by posting this video.

Related articles/previous posts from my blog referencing fibromyalgia and illnesses correlated to it/co-existing conditions:

Sunday, October 12, 2008 Endometriosis Blog: Vulvodynia And Vestibulitis, Launch Of Polish Website About Vulvodynia

Monday, October 6, 2008 Endometriosis Blog: Fibromyalgia Awareness And Resources For Endometriosis Patients Affected By This Commonly Co-Existing Condition


Sunday, September 7, 2008 Endometriosis Blog: NEW YouTube Video Clips! Endometriosis, Chronic Illness And Other Topics Of Interest!!

Monday, September 1, 2008 Endometriosis Blog: Fibromyalgia Awareness

Monday, August 11, 2008 Endometriosis Blog: Check Out Newly-Added Co-Existing Illness/Chronic Illness Links in "Frequently Visited Sites" At Bottom Of Homepage!!!

Saturday, June 21, 2008 Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses


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Second video from Lisa's husband:
Husband's Quest/Lisa's Story

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This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

8 comments:

Mckay K said...

Jeanne I did not want to cut my computer off without telling you what a wonderful (and that word does not do it justice) article this is.

Your letter to to the New York Times was excellent. I am proud to know such a courageous person.

I just watched the video and even though you warned me, I am still shaken by it. I did not realize that she committed suicide.

Her husband is so right, it is the PAIN that caused her depression.

Jannie Funster said...

Jeanne, I don't know where to start with this post. Why would the NY Times write that!?!?

And his video really made me cry.

I need to go make a cup of tea and hug my cat now.

Jeanne said...

Mckay k,

When I watched the first video this morning, I sobbed. I hadn't even planned to write a post today after posting two yesterday. However, once I had seen the video I felt compelled to share it with others as soon as possible.

I appreciate your kind words about the letter to the New York Times. I remember the night that I wrote that letter very clearly because I was too angry and upset to sleep that night after reading it. I think the NYT did a grave injustice to fibromyalgia patients everywhere. I also think there is a "spill-over" effect...

What I mean is that if the general reading public reads an article like that and believes fibromyalgia is imagined, then all patients with any "invisible chronic illness" are viewed as "suspect"...

It becomes a world where without a blood test or x-ray to "prove" the existence of an illness... patients like us face even MORE stigma than before.

Certainly there were many who disbelieved those with invisible illness before the NYT article was printed. I believe that articles like that are disturbing, dangerous, and irresponsible. Such articles just make it that much harder on patients... and cause even more disbelief/distrust in our society towards patients with poorly understood illnesses. (When I say "society" I mean healthcare providers, co-workers of those patients who are still able to work, neighbors, and even the family members of the patients).

I don't need to tell you that many people have trouble believing in illnesses they can't "see". I can't "see" air but I know I breathe it every day.

So that NYT article was, in my mind, downright dangerous. I knew that in my bones when I read it back in February. That was why I wrote that letter to the editor.

When I viewed this video today and Lisa's husband referred to the NYT article on fibro... I knew exactly which article he meant immediately. I had saved the letter I wrote to the NYT editor in my "fibro folder" of my email’s inbox. I decided to post the letter on my blog so that people could see another method of speaking up.

Videos, letters, writing blogs, verbally explaining to ‘receptive people’ one on one... All of these methods are ways to facilitate getting "society" to "understand".

I don't mean for people to necessarily be able to understand perfectly. I mean that maybe people can understand better than they would have otherwise.

It really shook me up to watch that video. I completely understand why you were shaken by it too. It occurred to me when I wrote the article that I should warn people before getting to the video part of the post... so they could brace themselves for something I found very intense and emotional.

It is shameful that people are suffering this way AND stigmatized by a large portion of society as well!

I only hope that by sharing these videos as widely as possible that we can increase awareness and understanding in our society. Hopefully we can get as many blogs and websites to display these videos as possible. I emailed many bloggers today with the link to this post in the hope that they would pass this along to others.

It would be amazing if we could get the word out to as many people as possible... Perhaps with enough voices speaking out in unison on this shows like Oprah will consider featuring Lisa's story.

Bravo to Lisa's husband for taking steps to help others, quite possibly prevent further such tragedies, and taking action that hopefully helps him to move forward in his life past this terrible, unspeakable loss. I cannot imagine what he is going through.

His videos are brave. His words really resonated for me. I only hope that his wife's story can reach more people and preventing this from happening to others.

Jeanne

Jeanne said...

Jannie,

I wish I could answer your question about WHY the New York Times published such a destructive letter!!

You should have seen me last February when I read it online. I was beyond livid!!

I stayed up all night writing back in February... writing to everyone I could think of who would listen!

First I wrote the NYT letter you saw on my post.

Then I emailed my local fibro support group to make sure they knew about the letter-writing campaign to the New York Times.

Then, because so many interstitial cystitis patients also have fibro, I wrote to my local IC support group to make them aware of it.

Then, I emailed my local endometriosis support group members (many of whom have fibro) to tell them about it.

Then I wrote to the National Fibromyalgia Association.

I had first spotted the link to the offending NYT article on the website of Fibromyalgia Network. They had requested to be copied on letters to the editor of NYT. So then I copied FN on my NYT letter too.

I literally wrote all night because I was so upset and too wide awake to consider sleeping.

Why the NYT would write that article is beyond me! They certainly didn’t respond to my letter to the editor (or the many others they were inundated with!) as I had hoped.

Ironically, a different reporter from the same paper had written an informative and supportive article about chronic pain associated with vulvodynia not long before the terrible "fibro = fiction" article was printed. (I have heard vulvodynia referred to as "fibromyalgia" of the vulvar area).

So I thought it was curious that one NYT article was helpful, accurate, and constructive about recognizing that “chronic invisible pain” DOES exist... and then a short time later another reporter from the same paper wrote that (totally illogical) NYT article that caused such an uproar.

I don't know what the agenda of the "fibro article" reporter was but it clearly wasn't truth or justice for the millions who suffer so greatly from fibro... and their loved ones.

Yes. Watching Lisa’s husband’s videos was very emotional for me. He really encapsulated things so well... the impact that an illness like fibro can have on the patient AND the family members of that patient... among others in their lives.

He covered so much information in relatively short span of time with these videos.

If we can spread the word throughout the blogosphere about this man's story and his late wife Lisa's story... It may very well help him in his efforts to have this addressed on shows like Oprah.

A show like that (with a huge audience) could truly impact many millions of people in a meaningful, positive way!!

Hopefully, blog by blog... website by website, patient by patient, and person by person... enough word of mouth will occur and enough letters will be written to the Oprah Show that this issue will be featured.

I think Lisa's husband is onto something with the idea of discussing fibromyalgia with various experts/doctors and patients in an open forum (... Oprah or not).

Hopefully his videos will motivate many people to write to www.oprah.com about this issue.

I was so drained by the time I posted the updated post (that contains both of his videos) that I didn't get to writing to Oprah just yet.

You can better believe writing to Oprah is on my “to-do” list now! (I just ran out of energy and time today)!

Hopefully, a sufficient number of people will write to Oprah about Lisa's tragedy. It would be a fantastic if Oprah would run this story.

It could very well prevent others from reaching such a tragic sense of desperation (as what Lisa must have felt)...

It sounds like you made a wise choice to 'disengage' when you had reached your own personal 'saturation point' on these upsetting issues.

I hope your cup of tea and time with your cat relaxed you after viewing the intense videos. :) I know they were troubling videos...

Self-care is very important for chronically ill patients. So I'm you took the time to step back and replenish your energy/relax. :)

I truly believe that these videos of Lisa’s husband can help many people. My hope is that they get very widely distributed and that Oprah gets so much mail on this that it would be hard not to feature this story.

Hopefully people will take a moment to log onto www.oprah.com to request that this story be featured. It could help millions of people!!!

Jeanne

endochick said...

It pisses me off to no end when a doctor says "you're depressed that's why you're in pain." No, it's not! I'm IN PAIN that's why I'm depressed. That stupid "drepression hurts" commercial for cymbalta doesn't help, either.

When you're not usually lying around crying and moping about and being disgruntled, but when the pain becomes unbearable - no matter what pain condition you suffer from - you become depressed then it's the pain doing it not you! These doctors need to learn that. Thankfully, my neuro knows the difference.

I would suggest people emailing Oprah, also ask Dr. Oz some questions about fibro. If he answers them it can get fibro exposure. Here is the link: https://www.oprah.com/plugform.jsp?plugId=697&referer=http://www.oprah.com/pluglist.jsp?teamTypeName=TOWS

Jeanne said...

Endochick,

It is incredibly frustrating that doctors can't seem to grasp whether it's the chicken or the egg with pain and depression.

Chronic illnesses result in depression at an alarmingly high rates. Medical studies have shown this again and again.

Sure there may be some patients who have depression before pain but more often it is pain that precedes depression... not the other way around.

I'm glad your neurologist knows the difference!

Thanks for the Oprah/Dr.Oz link. Wouldn't it be great if enough people wrote in that Oprah did do a show on fibro??!!

Jeanne

Anonymous said...

Hi everyone, my name is Marilyn. I have just watched both of Tom's videos. I cried terribly because I too have been suffering the horrors of fibromyalgia/chronic myofascial pain/disc.disease and others for 13 long and unbearable years. Lisa's story is my story. I thank Tom so much for honoring his wife in the most tremendous way possible. By letting her story be known to all. Also wrote to Oprah-Will write others. May God Bless us all and give us strength. God Bless You Tom. I know Lisa is so very, very proud of you for all that you are trying to do...

Jeanne said...

Marilyn,

I really cried when watching those videos too. It really upset me but I have so much respect for Tom posting these videos to honor Lisa's memory and to create better awareness and understanding in our society about these devastating illnesses. When I found those videos online, I was just blown away and had to share them here.

I'm so sorry that you are suffering so much! Lisa's story touched me very deeply because I could relate to the state of mind her husband described... feeling desperate, hopeless, and misunderstood. I have been chronically ill for 26 years now.

The effects are staggering: the health issues themselves, economics (i.e. "will my medical bills cause us to lose our house?"), feeling misunderstood by all but those who suffer similar conditions, the damage to self-esteem, the loss of activities that can no longer be performed, etc. It's draining, exhausting, frustrating, and exasperating.

I believe one of the biggest, most productive ways that chronically ill patients (and family members such as Tom) can do is to speak out, support fellow patients, create awareness, learn how to advocate for themselves, etc.

However desperate and hopeless our chronic illnesses may make us feel at times, I truly believe we can make a positive difference in the world simply by shedding light on these illnesses and the suffering they cause. If we speak out now and research improves treatments… or even someday heads down the path to cures for these illnesses, we may well prevent future generations from suffering as we do!

It may seem like we are powerless but we are not. I think it is FANTASTIC that you wrote to Oprah!! I intended to do so the day I posted this but I haven't had the energy to sit down and write a "proper" letter that might stand a chance of getting the attention of her staff.

If you would be willing to share part or your entire letter (you don't need to include your name or anything), perhaps I could post it on this blog as a "sample letter" to encourage others to write to Oprah about Lisa's story and Tom's self-described "crusade"??

Often when sending letters like this, it really helps to have a sample letter... not to copy word-for-word but to use as a sample to simply save time. Other letter writers would then customize their letters to their own personal experience but your comments (or even letter) might give them a springboard to start from when writing their own letter to Oprah.

If you'd like to post any comments from your Oprah letter here or if you'd like to email me directly (endendo@frontiernet.net), I would love to write a follow-up post referring back to this one. I could post a sample letter encouraging others to write Oprah too. The more letters they get, the better the odds they might air this important story!

I would not have to list your name on it. I could post a sample letter with no name at all and ask others to write their own tailored version to Oprah.

Hopefully you'll see this. Since your post was listed as anonymous, I don't have an email address or blog to reach you by. I would love it if you could share some/all of your comments to Oprah, though.

My thoughts are with you in dealing with your pain! I know the weather changing where I live is doing very bad things to my fibro the last few weeks. Hopefully you are in a better climate for managing fibro.

I'll bet Lisa is very proud of Tom... as you said.

THANK YOU for stopping by and commenting on this important story of Lisa's tragedy and Tom's wonderful efforts to not have her have gone through all that she did in vain!

Jeanne

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