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

[sue la-la]

I want simple scientific facts to smack them over the head with.

yes. x 1000.

 

[soti]

Just a random thought to throw out: I've always thought a good visual to pursue would be to show people going about their day with life bars above their heads as in a video game and sure, their energy gets depleted but they go to sleep and it gets back up to full energy!
Then there's us.... start with only a few blinking red bars even if we "don't look sick" and then get depleted into negative territory fast...all kinds of warnings about different systems failing... and then trying to rest to get it up which it never really does. Tagline maybe: can you see us?

 

[John Kim]

Hey everyone, there's a lot of great insights here. Yeah, the lack of branding is going to be difficult -- I don't know if it's even possible to choose an existing brand.

What if we just came up with a new name? Blank canvas, what would be the ideal name for this group of diseases?

 

[San Diego]

Hi @John Kim , welcome to Health Rising. We’re glad to have you.

Let us not forget the legal system, aside from the well-known abuse in disability cases, which has long been known to abuse ME/CFS patients.

I went thru a nasty legal battle while horribly ill (homebound/bed bound but legally required to appear in court). While my own testimony was practically incomprehensible due to dysautonomia/ME dementia worsened by 2 days in the courtroom, I had personal, medical, and professional witnesses. In the final order, however, I lost nearly every count, because, in the words of the judge, I did "not appear ill”.

I will suffer financially for the rest of my life because of that judge’s erroneous, misinformed, hateful, biased decision. I know I am not alone.

Side note: I looked like hell, to be sure. I ate nothing and drank very little so that I wouldn’t vomit or soil myself. I relied on countless medicines. During breaks, I lay on the floor. I used a wheelchair. To the uninformed I probably looked like I didn't care about hygiene or appearance, and was simply lazy and disrespectful enough to rest my head in my hands all day and rest my feet up on the adjacent chair. You see, even when our “invisible illnesses” become visible, they are often dismissed as lazy, malingering, or worse.

 

[Snow Leopard]

The stigma itself isn't the problem, the key is what we lose due to the stigma.

Life is tough when you can't concentrate for very long, you are in constant pain (I've had a headache for almost 15 years - it never goes away). But all of those are tolerable unless...

What we lose is what most people take for granted:
Relationships. Financial security (since we lose the ability to work). Hope for the future.
Limited energy means that we can't keep in touch, spend the same quality time as others.
Imagine you had just one hour of quality time a day. You can spend it on working, your hobby, or with your family. YOU HAVE TO CHOOSE ONE! You lose everything else for that day. Most people take whatever level of energy they have for granted. We know that what little we have can be taken away from us.

I have been ill since I was 15. I am a 31 year old virgin. Why? Because I've either never had the energy to actually date people (or have sex), or it has never worked out because most people are simply unwilling to date those who are severely ill, unless they are ill themselves. Something like 70% of patients are single and this increases for those who are severely ill and/or have been ill since they were a child. Not being able to have a romantic relationship and start a family is what hurts the most. This is something that most people take for granted!

In terms of family and friends, and meeting new people. I shouldn't have to endlessly explain what ME/CFS is and my limits and have constant lack of understanding. (my family are now supportive and friends who do not believe are no longer friends...)

Most of us do not have the energy/ability to work, yet we have to deal with endless bullshit with rejections by insurance companies and endless drama with government welfare. At the end of all this, we live a life of poverty on welfare. Those people who think living on welfare is a cushy stress-free lifestyle have never tried it.

But what about hope for the future? Given the incredible amount of public and private money spent on medical research, surely someone will figure it out?

The stigma hits just as hard here. There is a huge myth that there has been lots of research on this condition and they haven't found anything because there is nothing to find. This is why many people, including many doctors think that CFS is a psychologically-induced condition. This is the myth that I'd most like to see shattered. The lack of breakthroughs is because the work hasn't been done. There are very few heroic researchers in this field. There should be 100 times more, in terms of the ratio between disease burden (DALYs) and research funding.

Many of us lose what most people take for granted: families.

 

[Snow Leopard]

What if we just came up with a new name? Blank canvas, what would be the ideal name for this group of diseases?

CFS was always a placeholder.

ME still seems quite popular and Ramsay's disease (as the 'discoverer' of ME) is also very popular. The problem is that the WHO and others say, hey we don't name diseases after people any more. They say the disease name is supposed to be "neutral" and refer to the underlying pathology. But their guidance states that it is supposed to avoid stigma and such. So the name CFS has already failed in terms of their criteria.
http://news.sciencemag.org/health/2...se-who-has-new-rules-avoiding-offensive-names

But why should a group of people who have continuously fumbled the ball for decades have control of the name of our disease? Fuck them, maybe we need to say: we have the right to choose since you have chosen so poorly!

Maybe we need to be more bold with a marketing campaign: www.fuckcfs.com... (only partially joking!)

 

[tatt]

I forgot to mention the "you are faking so you can claim benefit" idea - I had a good job for years, managed my money well so I don't actually get any benefits. That one tends to throw my doctors. Then they are back to I don't know what is wrong, I can't help you so I'd rather pretend you are imagining it.

I've also had the doctor threaten to take me off their list ( I was unhappy that they had told me results of a test were normal when they were in a range where they should have taken action and that they hadn't done enough tests to rule out other illness. )

At the moment I'm in bed - because if I want to think straight its best if I lie down. Thinking takes some of my precious energy. Unfortunately you cant really see exhaustion.

I have learnt not to mention fatigue to a doctor, I talk about exhaustion instead.So maybe we need a name that includes that - frequently exhausted instead of chronic fatique.

 

[Pold]

Hey everyone, there's a lot of great insights here. Yeah, the lack of branding is going to be difficult -- I don't know if it's even possible to choose an existing brand.

What if we just came up with a new name? Blank canvas, what would be the ideal name for this group of diseases?

We could talk about the poorly understood neuroimmune diseases behind the name ME/CFS/SEID. We know there are immune abnormalities, and we know the nervous system is affected in various ways.

 

[Halcyonsf8]

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!

I have been completely abandoned by my family. Although I was sick for many years prior it wasn't until 1995 that I received a diagnosis. In all those years, with ALL the information available on the internet my family still doesn't "get it."

I honestly believe they think I am crazy because their verbally attacks, tough love and continued questions of "what is your problem?" leave me frazzled, confused, completely unable to think so I respond in a frustrated manor. I have attacked them for their ignorance after sending hundreds of articles for them to read.

I tried to commit suicide early on in my illness but failed and was publicly shamed by my brother for my "bogus suicide attempt." I actually met someone in November of 2013 who I informed of my illness immediately before we started dating. They didn't have a problem with it although they were 100% healthy and active. I was foolish in love and sold my house to move to FL with them. It didn't last a year before they decided they couldn't live with my illness.

Today, I am homeless, sleeping on a friend's couch. All my belongings were loaded onto a truck. I have no idea were they are. I assume they are gone forever but it doesn't really matter because I have no place to put them. I have been priced out of the housing market.

My pittance of a disability check will not go far at all. I cannot even cover my meds. I have been strong and alone for far too long. I guess we all have our breaking points. At 53, after 20+ years of illness and no support, I give. I think it's remarkable what's happening in the research community but sad that it has taken so long for the faintest of light to be shed on this disease. I wish you all the best on your journey toward health.

Thank you Cort, this forum has served me for years in my effort toward health. You have and are making all the difference in the world.

 

[Dana]

I don't look sick and I don't feel that people understand or want to hear me talk about it.

 

[Cort]

I have been completely abandoned by my family. Although I was sick for many years prior it wasn't until 1995 that I received a diagnosis. In all those years, with ALL the information available on the internet my family still doesn't "get it."

I honestly believe they think I am crazy because their verbally attacks, tough love and continued questions of "what is your problem?" leave me frazzled, confused, completely unable to think so I respond in a frustrated manor. I have attacked them for their ignorance after sending hundreds of articles for them to read.

I tried to commit suicide early on in my illness but failed and was publicly shamed by my brother for my "bogus suicide attempt." I actually met someone in November of 2013 who I informed of my illness immediately before we started dating. They didn't have a problem with it although they were 100% healthy and active. I was foolish in love and sold my house to move to FL with them. It didn't last a year before they decided they couldn't live with my illness.

Today, I am homeless, sleeping on a friend's couch. All my belongings were loaded onto a truck. I have no idea were they are. I assume they are gone forever but it doesn't really matter because I have no place to put them. I have been priced out of the housing market.

My pittance of a disability check will not go far at all. I cannot even cover my meds. I have been strong and alone for far too long. I guess we all have our breaking points. At 53, after 20+ years of illness and no support, I give. I think it's remarkable what's happening in the research community but sad that it has taken so long for the faintest of light to be shed on this disease. I wish you all the best on your journey toward health.

Thank you Cort, this forum has served me for years in my effort toward health. You have and are making all the difference in the world.

My gosh Halyconsf8 - you are up against it!

I totally get the housing market problems. I wonder if we had some sort of bulletin or housing board if we could match up people who wanted to share a place..

I wonder if its best to just stay completely away from your family...What a source of pain they can be...Giving them a wide, wide berth - if you're not already - may be the best idea.

Good luck with your current situation.

Your case really shows with the stigma of ME/CFS can do - divorce you from your family....

 

[Cort]

The stigma itself isn't the problem, the key is what we lose due to the stigma.

Life is tough when you can't concentrate for very long, you are in constant pain (I've had a headache for almost 15 years - it never goes away). But all of those are tolerable unless...

What we lose is what most people take for granted:
Relationships. Financial security (since we lose the ability to work). Hope for the future.
Limited energy means that we can't keep in touch, spend the same quality time as others.
Imagine you had just one hour of quality time a day. You can spend it on working, your hobby, or with your family. YOU HAVE TO CHOOSE ONE! You lose everything else for that day. Most people take whatever level of energy they have for granted. We know that what little we have can be taken away from us.

I have been ill since I was 15. I am a 31 year old virgin. Why? Because I've either never had the energy to actually date people (or have sex), or it has never worked out because most people are simply unwilling to date those who are severely ill, unless they are ill themselves. Something like 70% of patients are single and this increases for those who are severely ill and/or have been ill since they were a child. Not being able to have a romantic relationship and start a family is what hurts the most. This is something that most people take for granted!

In terms of family and friends, and meeting new people. I shouldn't have to endlessly explain what ME/CFS is and my limits and have constant lack of understanding. (my family are now supportive and friends who do not believe are no longer friends...)

Most of us do not have the energy/ability to work, yet we have to deal with endless bullshit with rejections by insurance companies and endless drama with government welfare. At the end of all this, we live a life of poverty on welfare. Those people who think living on welfare is a cushy stress-free lifestyle have never tried it.

But what about hope for the future? Given the incredible amount of public and private money spent on medical research, surely someone will figure it out?

The stigma hits just as hard here. There is a huge myth that there has been lots of research on this condition and they haven't found anything because there is nothing to find. This is why many people, including many doctors think that CFS is a psychologically-induced condition. This is the myth that I'd most like to see shattered. The lack of breakthroughs is because the work hasn't been done. There are very few heroic researchers in this field. There should be 100 times more, in terms of the ratio between disease burden (DALYs) and research funding.

Many of us lose what most people take for granted: families.

Saying it like it is Snow Leopard

• Dating? How do you date with this disease (particularly when you're not really "up" to it in so many ways).
• Finances - I'm lucky - I'll should get something from my father at some point. I hope to God it's enough. I don't know if it will be.... Otherwise I will be dependent at some point on the very small amount that Social Security will send my way - given low income and sometimes non-existent income for decades.
• Friends - on the internet only really....

 

[Cort]

Hey everyone, there's a lot of great insights here. Yeah, the lack of branding is going to be difficult -- I don't know if it's even possible to choose an existing brand.

What if we just came up with a new name? Blank canvas, what would be the ideal name for this group of diseases?

That may be the most difficult question of all...

 

[JennyJenny]

What if we just came up with a new name? Blank canvas, what would be the ideal name for this group of diseases?

Dr. Nancy Klimas and I think perhaps a couple other researchers suggested a name but I don't know where I read that so if someone knows perhaps they can post it here.

The problem is, if you don't have a major health organization taking that up such as NIH or CDC then no one in the healthcare system is going to care much. If Dr. Klimas still has to use CFS and all researchers around the country ME/CFS then that is a clear indication that they have to submit to get recognized and do their work.

 

[Cindy]

Thank you, John, for taking on this amazing marketing project!! Cort, thank you for this forum and for your dedication to keeping us educated and informed!

I've had some version of ME/CFS for forty years or more (starting as a teenager), but it was complicated by the fact that I had a life-threatening case of Hashimoto's Thyroiditis. It took me years to get the right thyroid diagnosis and many more years to get an ME/CFS/FM diagnosis. Doctors told me to see a psychiatrist, it was all in my head, they couldn't find anything wrong, blah blah. I finally got a real diagnosis in 1993.

I look healthy so many are skeptical of how ill I am or how the smallest thing can cause post-exertional fatigue. It hurts that friends and family members don't understand and often don't care, but not having doctors to TREAT my condition is HORRIBLE. There are times when I feel I should probably be in an Emergency Room at the hospital, but they wouldn't have a clue what to do. I want and feel it is my right to have a doctor who is educated about this disease.

On one of the forums, I saw this referred to as the NON-HIV AIDS -- which seems on point to me.

I have several friends who have had cancer and undergone chemotherapy; a couple of them have grasped the idea that living with ME/CFS is similar to their horrible experience with chemo --- except this condition never ends.

My life is a constant juggling act of trying to determine how to ration my little amount of energy. I am fortunate that I have a supportive husband who is my primary caregiver. (I think Cort's idea about some sort of bulletin or housing board to match up people who want to share a place is a great idea).

I thing the stigma may finally be starting to lessen, but there are still some "notable persons with ME/CFS" who won't "come out". I know the name is a problem and carries a stigma, but as crappy as it is, after all of these decades, I hope that as a community we can move forward in unison to find treatments for this disease rather than spend too much time focusing on the name. Some of us don't have too much time left and every day that goes by without a treatment (I won't even hope for a cure at this point) is a day closer to our ultimate demise.

It is great that persons with cancer, HIV/AIDS, MS, etc., have support programs in the US, but it disgusts me that there is absolutely no support mechanisms for persons with ME/CFS. I believe in time that this will be considered an autoimmune disease; I only hope I live long enough to see a formal apology by every government agency and medical professional.

 

[John Kim]

Dr. Nancy Klimas and I think perhaps a couple other researchers suggested a name but I don't know where I read that so if someone knows perhaps they can post it here.

The problem is, if you don't have a major health organization taking that up such as NIH or CDC then no one in the healthcare system is going to care much. If Dr. Klimas still has to use CFS and all researchers around the country ME/CFS then that is a clear indication that they have to submit to get recognized and do their work.

You know, that's really a compelling case to just go with CFS. I hear you all regarding how you feel about the name, but we have to also look at it this way: I'm not primarily marketing to you, you guys are already converts; I'm marketing to the non-informed masses -- the ones are likely to create stigmas.

My job in this particular endeavor isn't to directly get the masses to fully "get it" -- I'm telling you now, it's just not going to happen in a short ad. It is instead to first and foremost make the masses aware that CFS is a serious disease and to create associations with CFS that prime them to be more understanding, so that they're more easily convinced.

I also don't necessarily want to be direct. Take Nike's tagline, "just do it". It's not about getting you to directly buy their shoe per say, but it's telling you to empower yourself in your own life by "just doing it". You heed that advice in real life, feel empowered from heeding that advice, and you associate Nike with that feeling. Next time you're in the shoe store, when you see Nike, you associate that brand with making you feel strong. This all happens on a subconscious level.

Right now, people see CFS, they think bad things. Right now I want people to see CFS and think "this is real" in any capacity possible, and feel compelled to research CFS. If we want to fully convince someone, what needs to happen in tandem with what I'm doing is the creation of a site where they can immediately get educated about CFS and donate/do something to spread further awareness. That site doesn't exist yet.

 

[Empty]

Imagery has been dire for M.E. This is its own challenge. Often head in hands but in a work suit, etc.
Looking at the picture that is now on post one - may or may not be anything to do with your discussion.
I don't want to stereotype and assume that is a young lady, it could be a boy, but it looks like a young lady to me. Images are often of young women.

Putting the artist in me aside, broken and cracked imagery is often depicted. I do not like that, personally, because it does not reflect the truth. In this image the person has nail polish on and make up and is tentatively peering through rough, broken glass, touching it.

Don't touch it whilst giving a peculiar stare to the camera! stick on gardening gloves, clear the broken glass and then staple on a sheet of plastic because new window panes are expensive!

 

[Cort]

Here are some more comments from the Facebook post:

• 
  Connie Maddox Goodwin I am a nurse ! I told my doctor I don't have this ... I cant prove it can't see .. People just think you are whacko! He was so nice.. Although not a Christian he asked " do you believe in God !?! " exclaiming loudly " of Course " do you see him in pers...See More
  
• Claudia Heath Surely there is plenty written about the stigma already for the marketer to draw upon. The history of ME/CFS is littered with so much disbelief, misdiagnosis, missed diagnosis, dismissivenes, derision and misunderstanding, if he can't find enough perhaps someone else should be taking this job. Awareness raising is too important.
  
• 
  I feel like I always have to explain myself, even to my young adult kids and friends, over and over WHY I CAN'T even though they've known me the 18 yrs I've had this. I think I'm seen as "always talking about it" when even I have to point out the unseen limitations I face
  
• 
  Goodness , - where to start?! There's the invisible energy limitations, fluctuating noise and chemical sensitivities, poor ability to withstand stress or stimulus.
  
  Most ly stigma becomes problematic when experienced by medical practitioners - the mo...See More
• 
  Since I've been sick, people have constantly questioned me, judged me, put me down, make terrible assumptions, make fun of my disease and life and generally write me off. It's brutal. I used to be a well respected, well liked and valued member of society, all that was erased due to how people view those who are too sick to do things.
  
  People question my integrity...If I can do one thing, why not another?. ''Oh, my friend says'' you only do things that are fun''. That is why,according to her, my hpuse is a wreck. I do not enjoy living in this messy house.
  
  May be that's why I've become such a hermit---going out is exhausting and people don't understand this. Karen Hart: my house is a disaster area---what else could it be!! Just cannot keep up. Re: what others think---been there, too. I earned a Ph.D. as a single mother to two young children and five weeks after I filed my diss. I got mono. In my mid-40s with a "real" teaching job and two small children, I couldn't slow down to recover, and it hit me hard. It is as if I have never recovered, except that I'm much weaker now than I was with mono.. I worked for three years full-time after the mono and two years [part-time before I finally gave up.I left the academic world and returned to the family farm. And people (especially my sisters) think I am lazy or in need of mental health care. I left a grand life, teaching some of our nation's best students (in the Univ of California system)---the thought that one would choose to give this up blows my mind. If I'd wanted to stay home and make cookies (which I never do) I wouldn't have bothered to earn a Ph.D. first!!!!!
  Like · Reply · 3 hrs ·

 

[JennyJenny]

You know, that's really a compelling case to just go with CFS. I hear you all regarding how you feel about the name, but we have to also look at it this way: I'm not primarily marketing to you, you guys are already converts; I'm marketing to the non-informed masses -- the ones are likely to create stigmas.

My job in this particular endeavor isn't to directly get the masses to fully "get it" -- I'm telling you now, it's just not going to happen in a short ad. It is instead to first and foremost make the masses aware that CFS is a serious disease and to create associations with CFS that prime them to be more understanding, so that they're more easily convinced.

I also don't necessarily want to be direct. Take Nike's tagline, "just do it". It's not about getting you to directly buy their shoe per say, but it's telling you to empower yourself in your own life by "just doing it". You heed that advice in real life, feel empowered from heeding that advice, and you associate Nike with that feeling. Next time you're in the shoe store, when you see Nike, you associate that brand with making you feel strong. This all happens on a subconscious level.

Right now, people see CFS, they think bad things. Right now I want people to see CFS and think "this is real" in any capacity possible, and feel compelled to research CFS. If we want to fully convince someone, what needs to happen in tandem with what I'm doing is the creation of a site where they can immediately get educated about CFS and donate/do something to raise spread further awareness. That site doesn't exist yet.

I'm fine with CFS. It is actually my official diagnosis on my Disability paperwork filed in 2003, diagnosed under Fukuda by a Rheumatologist and Psychiatrist. Fought hardest by my Psychiatrist.

Some ME Advocates are going to go nuts. Nuts, I say. And there are those that will be angry you did not use the ME/CFS. But I am fine with CFS because it really did create the biggest stigma for us and it is what is stuck in the general public and healthcare system the most.

Thanks!

 

[KJM]

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 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!