I'd Like to Learn About the Stigmas You Guys Face

[Pold]

Hi Pold,

I should have mentioned that post of mine you quoted was a shot at a tagline directed to johnkim... not directed towards patients. Sorry for not making that clear.

Hi and sorry, I did not notice. Let's not go any further off topic (if you want to talk to me via private message I'm fine with that).

 

[Empty]

Hi and sorry, I did not notice. Let's not go any further off topic (if you want to talk to me via private message I'm fine with that).

For sure, but it was 100% my fault. I was just thinking 'tag lines' at the time of posting and forgot to say it. Thanks for the offer of PM and same goes here, but I have nothing really that I can offer of any use...

 

[Empty]

Do you know something about CFS we, as a CFS community, should know? I am confident my "real Doctor"/Neurologist, who was recognized and featured in "Best Doctors" by the U.S. News & World Report, will arrive at a diagnosis within this calendar year. If, as you suggest, CFS is actually another disease or condition, wouldn't the multitude of tests I've had indicate one of the above? Does POTS or Thyroid issues bring with it burning and aching pain? I think back decades ago when CFS was labeled the "Yuppie Disease".....which of the above was that? If you are right, then we should each take a different approach to solving this unrelenting affliction. Thank you for your thoughts.

Yuppie disease, here in the Uk was Myalgic Encephalomyelitis before CFS was being used. In the Uk the NHS does say M.E. is interchangeable with CFS but I have come to realise it is not. You can be tired, not really tested for anything and end up with a CFS diagnoses here.

I think the approach would be the same that we each should take, not different? That would be to get accurate testing and diagnoses through a battery of tests dished out in a logical manner.

 

[Empty]

I did not even know the blue ribbon was for M.E. So not attached to it at all. I only recognise a few symbols however, red poppy, white poppy, pink ribbon. I probably would recall more if I saw them. I wonder myself how popular the blue ribbon is?

 

[Grace2U]

I did not even know the blue ribbon was for M.E. So not attached to it at all. I only recognise a few symbols however, red poppy, white poppy, pink ribbon. I probably would recall more if I saw them. I wonder myself how popular the blue ribbon is?

I didn't know about the color blue either until maybe a year ago. ...... That says a lot to me, as one with this diagnosis.

 

[Grace2U]

[QUOTE="tatt,] I don't want sympathy or pity - I want fair investment in looking for a cure.

That's an accurate assessment - and an awesome sound bite for media![/QUOTE]
I also like where you are heading I do not have an entitlement mindset, but perhaps consider replacing one word....after all, I believe, we pay more than our share of taxes!
"I DESERVE a fair investment in looking for a cure".

 

[Empty]

I didn't know about the color blue either until maybe a year ago. ...... That says a lot to me, as one with this diagnosis.

I don't see it on forums or M.E charities. I think the 25% M.E. charity may have it. I hope I am not confusing that and causing offence. (Edit:http://www.25megroup.org/aboutGroup.html no blue ribbon. Tremendous quick link to increasing and decreasing font size though on page).

Here is an interesting list. It seems the blue ribbon stands for a lot of things:

http://awarenessribbongifts.com/awareness-ribbon-colors/

 

[Beth from Oz]

Grace2u : I'm glad you liked my post and love sarcasm. I used to have a cattle dog years ago when I still lived with my parents, her name was Cindy. They are a friendly breed, loving and protective and excellent companions. I would take her for long walks and when she got bored she would circle me and nip at my ankles gently as if I were a sheep to push me in the direction of home.
I didn't know about the blue ribbon thing either.

Empty: there seems to be too many blue ribbons. Maybe we should switch to indigo or turquoise or cerulean, the last two being bright, stand out colours. (Aussie spelling)

From what I've read on the thread so far:
- we want the science behind ME/CFS to be known to everyone
-we want people to see the honest truth about how it affects us, even to the bed bound
-we deserve to have our illness funded fairly
-we don't necessarily want sympathy, just a return to our lives or a chance to live them
-we don't look sick, but that's no excuse not to believe us (I'm thinking of when I had morning sickness, how people would tell me how nice I looked, just before emptying my stomach)

and a few people like the idea of a visual of energy bars above people's heads, showing the difference between normal tiredness and what we have. Apologies for any points I have forgotten.

To take this idea a little further, our culture seems to value the idea that we can control our destiny, that we can push hard and accomplish great things. The doer is valued more than the thinker or philosopher. So marketing the idea that we ARE accomplishing something great when we get out of bed, something that uses all of our strength and willpower, that we are strong just by coping with hellish adversity. We need to re-characterise ourselves as fighters against great opposition, from our bodies, from our community, our families, our station in life and our medical community. We will do this we will achieve we are strong. Sounds inspiring, and people can relate to it and it crushes the idea we are just copping out.

 

[soti]

Beth from Oz, I think that last point you just made is very important. Our culture is *very* big on this idea that self-control and agency is everything (US and Australia more than Europe I would think, UK and Ireland more than continental Europe). Our existence in that context in people's brains seems to indicate that we are practically un-American/Australian etc., so it really needs to be countered.

 

[Beth from Oz]

Beth from Oz, I think that last point you just made is very important. Our culture is *very* big on this idea that self-control and agency is everything (US and Australia more than Europe I would think, UK and Ireland more than continental Europe). Our existence in that context in people's brains seems to indicate that we are practically un-American/Australian etc., so it really needs to be countered.

Thanks Soti.
I was wondering if that one reason why people turn away from us, the thought of not being in control of ones own life can be terrifying. maybe we need to promote how much Pwcfs have contributed (Laura Hillenbrand for example) or did contribute before being sick, and how much they would like to contribute given better health. That may counter the idea that we aren't very American/Australian etc.
It's definitely a cultural thing.
The western idea of hard work and overcoming adversity is a good one, but shouldn't be used as an excuse to denigrate others who are less able. Though I suppose people with visible illnesses once had the same prejudices to overcome as we do now. We need to show ourselves as those fighting against adversity, then people might want to fight along with us.

 

[ScottTriGuy]

Thanks Soti.
I was wondering if that one reason why people turn away from us, the thought of not being in control of ones own life can be terrifying. maybe we need to promote how much Pwcfs have contributed (Laura Hillenbrand for example) or did contribute before being sick, and how much they would like to contribute given better health. That may counter the idea that we aren't very American/Australian etc.
It's definitely a cultural thing.
The western idea of hard work and overcoming adversity is a good one, but shouldn't be used as an excuse to denigrate others who are less able. Though I suppose people with visible illnesses once had the same prejudices to overcome as we do now. We need to show ourselves as those fighting against adversity, then people might want to fight along with us.

With the "if you just work hard enough you will overcome" viewpoint prevalent, I totally concur that contrasting our lives before becoming sick (when we were 'hard workers') with our lives since becoming sick is an important awareness element:

"I used to be able to do _________________, then I got sick with m.e., and now I can only do _____________________."

No doubt we all will be able to fill in the first blank with many physical, social, and mental aspects we have lost (temporarily!).

 

[Tammy7]

I would love love love to see more marketing that shows VISUALLY how we really feel. One picture would show a picture of a person with CFS/ME.........this is me with CFS/ME a debilitating INVISIBLE illness....................and then show another picture of how we REALLY feel. The picture should show ashen color face, dark circles under eyes, etc, etc,............."This is how I really feel but you just can't see it" WE NEED TO MARKET THE VISUAL ALONG WITH THE MESSAGE. Visual Marketing should be all over the place...........THIS IS WHAT THE DISEASE CFS/ME REALLY LOOKS LIKE.........

I really feel that half the battle is we don't look sick. The other persons brain just isn't getting the proper signal when there are no visual clues...............I really feel this is important! A friend of mine has been helping me out a couple of days a week for almost two years. I really thought that for the most part that he understood....but sometimes I question it. I showed him a picture of the avatar of member @JennyJenny and told him that's how my whole body should look. He said he had no idea it could be that bad..................it really affected him. I've never seen him that affected and that's after two years of him really knowing my limitations. He has treated me differently since looking at that picture..............not that he treated me bad before.........he just seems more aware and more sympathetic and understanding. He's almost treating me like I feel everyone should be treating me. He said the visual for him was POWERFUL and made all the difference in the world.
It shouldn't have but that's just the way it is. The brain needs visual clues to really get it.

 

[Empty]

Beth from oz

https://en.wikipedia.org/wiki/List_of_awareness_ribbons

Crazy ribbon systems. I never knew so many ribbons existed. Turquoise is already taken too. I wonder if there is something better than a ribbon. I don't think I really like the ribbons. Obviously done though because they are cheap materials and cheap to make...

 

[Patty May]

I was pretty easy going and submissive and pretty much took the abuse of drugs they through at me. I actually don't blame my doctors as much as the entire health system, CDC, NIH and generally bad research (XMRV) was tossing them around and doing their best to navigate my symptoms.

I am angrier now and disgusted that funds for research is not coming through.

If I am correct it can still take 3-5 years to get a diagnosis even if you become very ill from the get go. I am hopeful that the SEID criteria will get more patients diagnosed and fast. And the PEM is recognized and GET is THROWN OUT and CBT is pushed to the side. (Research is showing it is not working for Depression patients anyway.)

I am angry more than anything. Angry for the entire healthcare system not listening to patients and needing research to believe us. Because millions worldwide make this stuff up. The UK and Australia research is bent towards psychiatric issues and I don't trust much coming out of those countries.

Yes, doctors, the CDC and NIH, having to fight for our research, infighting with definitions and names, are taking a toll on us emotionally. The illness is not an emotional one but the process of getting care causes us emotional issues.

I totally understand! A couple weeks ago a very good friend and I were out walking, and she was telling me how her other friend "doesn't believe" in Fibromyalgia or Chronic Fatigue! This is one of my closest friends, and she has seen my best and worst (almost) times, yet still in the back of her mind believes it's a matter of "believing" in it! I of course lost my temper and had a meltdown. So much for getting fresh air for about two weeks, that situation (the stress) put me down with a flare up. So,yes, we need to educate all the people that ME/CFS and Fibromyalgia are real! If you can help that would be awesome, thank you!!!!!

I have been sick since 1986, and have had many, many people in and out of the health profession with the attitude of "not be!ieving in" Fibromyalgia or Chronic Fatigue Syndrome. We

I was pretty easy going and submissive and pretty much took the abuse of drugs they through at me. I actually don't blame my doctors as much as the entire health system, CDC, NIH and generally bad research (XMRV) was tossing them around and doing their best to navigate my symptoms.

I am angrier now and disgusted that funds for research is not coming through.

If I am correct it can still take 3-5 years to get a diagnosis even if you become very ill from the get go. I am hopeful that the SEID criteria will get more patients diagnosed and fast. And the PEM is recognized and GET is THROWN OUT and CBT is pushed to the side. (Research is showing it is not working for Depression patients anyway.)

I am angry more than anything. Angry for the entire healthcare system not listening to patients and needing research to believe us. Because millions worldwide make this stuff up. The UK and Australia research is bent towards psychiatric issues and I don't trust much coming out of those countries.

Yes, doctors, the CDC and NIH, having to fight for our research, infighting with definitions and names, are taking a toll on us emotionally. The illness is not an emotional one but the process of getting care causes us emotional issues.

 

[kauri schmid]

Hi Everyone,[fright]
View attachment 601[/fright]
I'm new to this forum. To give some backstory, my childhood friend has a severe case of ME/CFS and his father is leading an effort at Stanford to research the disease and I really want to do what I can to help ME/CFS as a whole. I'm personally not a scientist so I cannot help in that way, but I do work in advertising and I have a deep understanding on how marketing works as a whole, so I'd like to offer myself to the cause in that way: to help fundraising and raise awareness. I'd like to ask you, the community, a number of questions to help my efforts to raise awareness:

• What stigmas do you deal with on a daily basis from either friends/family/colleagues or doctors/physicians?
• What did you have to go through to get diagnosed?
• Have the stigmas gotten better throughout the years or has it stayed about the same?

Any insights that you guys can give me will be of great help, thank you!

Hi John,
It is wonderful that you are interested and willing to help us. Thank you. You might find some interesting things in a paper I wrote called "The ME/CFS Stigma." (It has a couple of cartoons I drew to sum up the frustrations
It has quite a few examples of the different things about ME/CFS that can lead to people stigmatize us, and what that means for us. You can find it at: http://phoenixrising.me/archives/16291
Thanks again, and good luck with your efforts.
Kauri

 

[Katie]

Yay! Someone is not just trying to help but is actually going to do something! Thank you.
The worst stigmas came from my family (brother and mother, not my kids) and the medical community.
I was asked by an specialist: "what do you want me to do about it?"
I wrote down all my symptoms head to toe, gave it to 3 doctors. One did not read it, one said "it doesn't matter what the diagnosis is" and the other scoffed and said "you don't have CFS". Well I do. It was diagnosed 12 years after I became sick (as well as FM). I am also an RN-so I know medicine and I know myself.
One doctor told me to make activity my job-I used to swim 40+ lengths, ski, hike etc. I tried but could no longer swim one length, I kept walking even with a limp. I was horrified that nobody could find something physically wrong. I tried to hide my illness by going out or seeing family only if I was well rested and had make-up on. It was hard to hide 3 years ago when I only weighed 82 lbs. (I'm off wheat and dairy and other foods and have gained the weight back)
I had been diagnosed with chronic depression x 15 years before I got ME. I was a single parent with 3 kids and no support what-so-ever. I battled as long as I could then collapsed-everyone thought it was a mental breakdown and I could see how they may think that. The harder I tried to get back to normal the worse (physically) I got until I was bed-ridden 3 years ago. I lost nearly everyone of my "friends" as we were all active together.
I have improved but still mostly housebound. I only dream of skiing and swimming again.
I am a patient at the new Complex Chronic Disease Program and "I am believed!" and they "get it"

 

[JennyJenny]

He said the visual for him was POWERFUL and made all the difference in the world.

Illustrations are very powerful.

Two Sisters from my congregation saw me today and I told them I am unable to get to the congregation often because I have CFS. Well you know the spiel, she said she sometimes feels like she has that and can't get up and she has to take a cold shower. Well, obviously I didn't hit her but I wanted to tell her that she may be taking her chances if she says that again to the wrong patient or caretaker.

One of the Danish? petitions has a picture of his wife the night before when they went to dinner and what she looked like the next day. Pretty stark. We could use something that is an illustration that shows that. I like the fMRI brain scans Dr. Montoya did at Stanford on ME/CFS patients. Did you see them and read the NY Times Article?

@John Kim - Maybe you can get permission to use the brain scans.
The top scans are a control patient and the bottom scans are an ME/CFS patient.
http://well.blogs.nytimes.com/2014/...-fatigue-syndrome-offer-clues-about-disorder/

 

[JennyJenny]

Hi John,
It is wonderful that you are interested and willing to help us. Thank you. You might find some interesting things in a paper I wrote called "The ME/CFS Stigma." (It has a couple of cartoons I drew to sum up the frustrations
It has quite a few examples of the different things about ME/CFS that can lead to people stigmatize us, and what that means for us. You can find it at: http://phoenixrising.me/archives/16291
Thanks again, and good luck with your efforts.
Kauri

I really like the EXIT - lol That would be a good one to use @John Kim.

 

[JennyJenny]

Beth from oz

https://en.wikipedia.org/wiki/List_of_awareness_ribbons

Crazy ribbon systems. I never knew so many ribbons existed. Turquoise is already taken too. I wonder if there is something better than a ribbon. I don't think I really like the ribbons. Obviously done though because they are cheap materials and cheap to make...

I really like the "ribbon" being used by Ryan Prior for his Fellowship. http://www.forgottenplague.com/shop/

It is a twisted DNA strand in a light and dark blue.

 

[fdotx]

This is all great stuff everyone, it's helping me form strategies for this. It seems like common themes are emerging here:

• Alienation
• Feeling slighted by the system
• A lack of empathy
• Anger
• Helplessness
• Self loathing

These are huge insights that I'm getting.

Now here is where I'm seeing the biggest challenge:

Speaking as someone who has tried to research CFS online throughout the years, I get confused in a convoluted mess -- it seems like we're looking at a classic branding challenge with the disease. Because so little is known about CFS, a clump of diseases and ailments get clumped in that category and each one of those are trying to be defined (from bacterial infections to cystic fibrosis to chronic fatigue to ME to chronic fatigue syndrome).

This is all due to a lack of a proper diagnosis, which is being worked on, and which we want to support.

Now here's the solution I'm seeing:


What if we just go with CFS? It already has a high brand recognition in the media and all of the people affected by any one of those diseases has gone through all of those emotions that are listed above, which are gut wrenching I might add. Including everyone will widen the immediate audience, especially because we'll be looking for a diagnosis.

We'll make the biggest goal of this phase to be all about getting people to understand the anxiety, and to offer a solution to create hope. Say, a tag line like "If you believe". This allows us to market the problem, even to doctors. This also allows us to use it's counter, "I believe", as a thanks to anyone who treats another with CFS with dignity, joins the research movement and/or donates to the cause.

I'm open to all suggestions as I'm still just trying to figure this out, hopefully uniting the diseases wouldn't create a backlash. Also how attached is everyone to the blue ribbon as the symbol?

Hi John, thanks for your interest and what you're doing. I think the fact, as you state, that we really don't know what CFS is and so it gets clumped with other illnesses that may not turn out to be CFS, whatever that is, is a big problem. There were a few speakers on the recent Energy Summit who said there is no disease CFS, it's a group of symptoms, and really for now, I can understand that way of thinking. When there are patients such as Whitney and others who work full time, both diagnosed with CFS, I can understand the confusion of the general public.