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

[Kyla]

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?

John Kim
I have to respectfully disagree that branding it as CFS is a good idea for the following reasons:

- ME was the original name connected to the disease and has an existing diagnostic code in the WHO. It is also the name used in many places outside the US

- Chronic Fatigue Syndrome is often confused with the symptom of chronic fatigue by both the general public and by the medical community. It helps to make CFS into a meaningless garbage-bag diagnosis of people with fatigue.
It also makes people assume it is a non-serious disease where fatigue is the only symptom.

- there have been a number of studies done showing that much of the disdain towards the disease is CAUSED by the name CFS. Med students given the same list of symptoms with one name or the other did not consider it a serious disease when they were told it was called CFS. Look up studies by Leonard Jason.

- the BPS lobby in the UK has tied the name CFS to the idea of malingering and somatization in a way I don't personally believe is reversible.

- a large portion of the patient community will never accept CFS as the name. For the reasons listed above + others

 

[Pold]

Hi John

I think the right approach is to speak of discrimination. We're being discriminated against and have the statistics to prove it (IOM report for example). Governments around the world (possibly with the exception of Norway) have decided that we're undeserving of research, treatment, support, and even a diagnosis. The establishment comes up with various excuses to justify the ongoing discrimination and save face. Some groups also have financial interests in maintaining the status quo (the insurance industry saves a lot by labelling it as mental disorder, and they're allied with psychologists that sell and promote comically ineffective psychological therapies).

I think focusing on the emotional experience of patients could go wrong because it risks playing right into the stigma that this is a mental disorder (more specifically, doctors could be tempted to think that patients are somatizing their emotional troubles).

In a certain sense we have already won the debate on a scientific and logical level, but the broader public is unaware due to the information not being disseminated. It's still socially acceptable to make fun of or blame patients and this needs to change.

We need to go on the offensive and attack the structures that are responsible for maintaining the horrible status quo: no treatment, barely any research, no support, difficulty in getting a diagnosis, and pertinent information not being disseminated.

 

[Pold]

That being said, I would be careful about using the term discrimination as well, because unfortunately it has an extremely negative image as tends to be used in very volatile situations and without mature discussion about how to resolve it.

Some people use neglect but it's too weak as a word. Maybe we should talk about an almost complete failure of the relevant government agencies to accomplish their goal of serving these patients?

 

[tatt]

stigma - I'm in the uk so of course I'm labelled as a psychiatric patient, although I'm not depressed. I was diagnosed as depressed once before because I kept waking in the night, that turned out to be laryngopharyngeal reflux, fortunately responsive to medication. I find visiting my doctors depressing.

My main problem - and the one that distinguishes ME from other diseases - is that I can't exercise. People look at me and think I'm lazy. I thought I'd found a cure once (gluten free diet) and used to enjoy going to the gym (but that caused a relapse). Now I just want to be able to walk up a hill without stopping. People 20 years older can walk faster, my neighbour with cancer can get out more. But I dont want sympathy or pity - I want fair investment in looking for a cure.

I'm sure there will be subsets of people within what is currently labelled ME or CFS. I dont care what you call it as long as you work on developing solutions. The first step is demonstrating, through more studies of the sort that look at exercise on consecutive days or what happens in the body during exercise that there genuinely is something different going on. Then perhaps there will be a way to stop it. I would like my doctor to stop treating me as a psychiatric patient because I have an abnormal response to activity.

Like many people I suffer a bit with brain fog - though I didnt until I went to a meeting with researchers and realised how much I've lost. But, if you'll forgive the bragging, I went to university when only 5% of the population did so. On a good day I can still understand scientific papers and I want to be able to discuss them with a doctor who will recognise that I have more time and interest in researching this problem than he does and the sense not to raise anything without a scientific base with him.

I didn't seek a diagnosis for years, because I guessed it would be the end of any proper health care. Sadly I was right.

 

[Telula]

I've had to deal with people, including medical professionals, calling me either to my face or behind my back: lazy, faker, liar. I've had my parents and I accused of having munchausens syndrome of which there are only yever actually like 8 real cases per year max simply because I got sick as a child and when doctors can't find what's wrong they go crazy and call social services because they can't handle a bruised ego when they don't know the answer. I've had people yell at me or stare for parking in the handicapped space or even just having my handicap sticker on while driving or parking elsewhere because I'm young so ''it's not possible for such a young person to be that sick without a wheelchair" direct quote. I've had airport attendants and wheelchair pushers treat me like dirt and like I don't deserve their time to push me to my gate because I don't have a 'real illness' and I'm young and so ill.
I was out of school for a year and came back to a rumor that I was dead and was called 'dead girl' or zombie quite a bit.
I've been forced to do physical therapy (even through a stomach flu) or exercise involved tests even though evidence shows it makes me and others with CFS much worse with absolutely no care from any of the medical practitioners.
I've been threatened to be black listed from an entire practice when one doctor who thought the 'cure for CFS is just to reduce my stress and exercise' (that has been said to me more times than I can count including by nurses, a dermatologist, and many other specialties) if I didn't go off my meds and go into an exercise program that I was clearly not healthy enough to do.
I constantly get 'you don't look sick' or 'at least you don't look sick while you are' or 'no one would believe you are sick, you're so lucky'. I'm not lucky. I would rather look sick so people believed me. And there are way too many times people say 'oh yeah I've had chronic fatigue' because the name is so bad and misleading.

The stigma has not gotten better. Society still thinks there are only two kinds of illness either deadly or curable and everyone but us sufferers completely forgets there is chronic illness and sometimes incurable and that illness can affect young people too. There's still a huge stigma about looking sick being the only way to be genuinely ill. It's still ridiculously hard to find good doctors who believe us even if they have no specialty in CFS, and every time I go into a new doc appointment I'm nearly shaking with nervousness about if they will be a huge jerk or not because I have CFS or because I'm on a bunch of medications to help slee and pain and huge nausea.

 

[michele]

One of the worst things people say is "I get tired too". Before I got sick with CFIDS/ME, I would get tired but there is no comparison and there is no way to make people understand. This is because of the stupid name. This is because people don't know about the disease because there is nothing in the media that even attempts to explain it. If you tell people you have Myalgic Encephomylitis they go "huh, what's that?" Then I really don't want to go through the list.
When I'm tired and have cognitive problems I think people think I'm on drugs or something because no one could possibly be that dense.
When I was first sick I went to some really bad docs who were clueless and told me to do aerobics. Even now when I see some docs when I tell them I have CFIDS/ME I can tell they don't get it at all, they know nothing about it and don't care.
Now that I'm older people expect me to have some ailments and I don't get the level of rudeness that I used to get.

 

[Pold]

I got sick as teenager. At first my parents believed that I was making it up. My father, who is a doctor, still thinks this illness is psychosomatic. It's not possible to talk to my father about my health problems, as he immediately tries to steer the conversation towards denying that there is any problem. Doctors do this because they think that psychosomatic disease gets worse when symptoms are acknowledged, sympathy is shown, medical tests or treatment is done. Tough love is seen as the right course of action. As a result, the help a person with, in the doctor's eyes psychosomatic, disease receives is identical to what a normal person would call neglect and abuse.

In general people take a long time to understand that I'm actually reduced in my ability to function normally in ways that are difficult to describe.

 

[Cort]

I got sick as teenager. At first my parents believed that I was making it up. My father, who is a doctor, still thinks this illness is psychosomatic. It's not possible to talk to my father about my health problems, as he immediately tries to steer the conversation towards denying that there is any problem. Doctors do this because they think that psychosomatic disease gets worse when symptoms are acknowledged, sympathy is shown, medical tests or treatment is done. As a result, the help a person with, in the doctor's eyes psychosomatic, disease receives is identical to what a normal person would call neglect and abuse.

Great point - I had forgotten about that view of managing ME/CFS....

From hearing several stories of people with ME/CFS who have medical professionals in their family can have the hardest time. I've heard of people who have been completely disowned by the doctor parents. Families without doctors or medical professionals can probably get ME/CFS or FM better - they simply know their loved on is ill..

 

[Albert Chang]

Hey John (Kim). Do you happen to live in, or around Palo Alto? I am a ME/CFS sufferer myself, and it would be nice to meet you in person if you local...
-Albert

 

[emilyc]

First of all, thank you John Kim, wonderful friend of a PwME (Person with Myalgic Encephalomyelitis), for believing your friend and going to such great lengths to help them and, by extension, all of us. It's so rare for this to happen that nearly cried when I saw it.

I have a ton to say on this subject but am not well enough to say much and haven't been able to read the whole thread. I'm sorry if some of this is repetitive. I'm going to skip the stuff I think you will hear from everyone else. There's massive stigma at every level from friends, family, doctors, neighbors, and so on. I thought I had finally figured out how to deal with it: who to avoid, never to tell a physician unless I had to, etc. Then as my condition worsened to Severe and it began to impact my ability to perform really basic functions, a new level of stigma developed. (I'm 90% bedbound, I rely on my mother for nearly everything, light and sound make me ill. Being transported to a medical appointment once a month is at the outside edge of what I can do) Suddenly friends who had been supportive for a decade were not anymore. Doctors who believe CFS is real simply cannot wrap their head around the fact that it can be this bad. It is assumed that I am "milking it" or afraid of activity or that mental illness is causing the extra problems. Just last week I had a Stanford physician, someone on the board of the CFS clinic ask me after I described my day and answered questions about activity level "Why don't you leave the house? Are you afraid or what is it?" After I explained my physical limitations again he told me he didn't believe in this "treatment approach" for CFS, as if this was a behavioral choice. The health problem for which I had gone to see him didn't receive any further attention. Perhaps he felt I would be noncompliant or had given up and therefore wasn't worth his time. I left with the indication that there wouldn't be any further investigation or possibly of future treatment. And crushing despair that I couldn't get help with an extremely debilitating symptom from a top notch expert in that type of symptom and CFS-literate physician who says he has great respect for the physician spearheading groundbreaking research in the field at that very institution.

This has been an ongoing problem as I try to parcel out my remaining energy for healthcare. Last year I developed an autoimmune disease, which had previously been ruled out many times. It took nine months and irreversible neurological damage before it was diagnosed. Unbeknownst to me the only neurologist I had access to had me filed as a somatiform case and therefore believed ordering tests would only fuel my illness. (Always request copies of your chart notes early and often!)

I believe Janet Dafoe Recently referred to this kind of medical neglect as malpractice. ( had I the energy I would have shouted "yes!" At the YouTube video.)

Here's a blog post I wrote for awareness day. It's directed at a patient audience and isn't directly addressing this question but might be applicable. http://artifactsofme.blogspot.com/2015/05/comorbidity-me-ms-and-exile-in-silicon.html?m=1

I'll try to come back later and write more. In the meantime, thank you!

 

[Albert Chang]

@emilyc -- re: your office visit with the CFS-literate doctor @Stanford, I am not surpised. I, too experienced something similar with a CFS-literate practitioner, within Dr. Montoya's team. This practitioner, who I believe was a Physician Assistant, didn't appear to behave, or respond in a way commensurate with people who have been diagnosed with ME/CFS. Example: when I was speaking about heart-attack and stroke-like ailments (basically some really crazy upper-torso ailments), the PA directed me to get in contact with my Primary Care Physician to see what can be done test and treatment wise. As if this entire upper-torso condition has nothing to do with all my ME/CFS stuff. The problem is that my PCP doesn't jack squat about ME/CFS or Fibromyalgia, Lupus, etc...

But I digress given the purpose of this thread...

 

[JennyJenny]

Fibromyalgia and ME/CFS are the same thing, we just call it fibromyalgia when the pain is more predominant and ME/CFS when the fatigue is more predominant.

I have both and I can completely separate the two by looking at their separate symptoms even though they have cross over symptoms. I have 2 other family members with Fibro and they do get fatigue but not PEM. PEM is THE differentiating symptom in ME/CFS and no other illness has it. Well, I believe Gulf War Syndrome does. But I had Fibro first for 5 years starting at age 13 and I never had PEM until I was 17 from mono and there was a drastic difference in fatigue/exhaustion/mental clarity, etc. after doing anything.

I think that is also how some people were misdiagnosed with CFS because they did have serious fatigue for one reason or another but they got better and they think they really did have CFS but this is lifelong. Even if you go through better periods which I did throughout my life you are never well again. (There is a theory that people have become very sick for a few months but did not go into ME/CFS but could have and recovered but they were just fighting something and did not go into ME/CFS like someone who probably has a genetic Neuro-immune fault. Remember, Cytokines are suppose to alert and for our own good but not shutting off or becoming damaged is the problem.)

It will be proven probably within the next 5 years and I am sure no more than 10 even with the limited funding because the Researchers are going to take their findings and compare them with not just healthy controls but those with various diseases. I believe the quickest thought not cheapest way to accomplish that right now is with the fMRI scans. Dr. Montoya as Stamford was able to show the inflammation of the brain and none in healthy controls and now what we need are Fibro and Lyme and Lupus and MS and Parksinson, etc. controls. Game over in anyone saying that Fibro and ME/CFS are the same or Lyme and ME/CFS. I really hope Hornig and Lipkin or the BIG severly ill study can come up with a really accurate bio-marker soon. And even though I don't think Gulf War Syndrome patients will have inflamed brains like we do I do believe that the Cytokine that is responsible for causing our PEM is also damaged in them.

 

[JennyJenny]

Oh, and people tend to believe we are Agoraphobic. Not in the least for me.

 

[JennyJenny]

My main problem - and the one that distinguishes ME from other diseases - is that I can't exercise.

Exactly.

 

[Singout]

Thank you for asking! So good to have allies who aren't directly experiencing the illness themselves.
Diagnosis: I was dxd almost 7 years ago, after 1 year of illness, by my then-G.P. with "Chronic Fatigue Syndrome." That was good. However, he went on to tell me that I should "accept it" and "work through it," and when I went on to ask to see a specialist, he said I "wanted something exotic," was "making a hobby" of being sick, and that he envied me for having a 4-day work week.

Stigma: some experiences like the above with some of the specialists I've seen in the last 2 years, since my symptoms became much more severe and I've been getting more testing. Skepticism about the existence of M.E., and suspicion of me for doing my own medical research, and/or for having seen non-Western practitioners.
Reassurance that I will recover because others have. Although it's well intended, and I do believe that some people have recovered, and that my symptoms are currently improving, there's no way for me to know that others have had the same illness I do. Sometimes it feels like those people will only sustain a relationship with me if I recover "on schedule."

I sometimes feel that because my energy and abilities vary, people wonder if I'm exaggerating.

When I first got sick, I took a lot of days off in year 1, and then went down to a 4-day week in years 2 and 3. My workplace was very supportive, except the staff person who was responsible for helping me get disability coverage was very cold. I'm presently trying to get disability coverage now that I've been unable to work for 2 years, and have been told that I'm perfectly capable of earning a living.

Thanks again and good luck!

 

[Dee4dogs]

I was diagnosed with CFS in 1989, I had an active EBV infection for 2 years. The 2 names were used interchangeably at the time. I slowly regained a functional life with limitations for several years. It was getting the Fibro diagnosis about 5 yrs later that was difficult. As with many people I was misdiagnosed and put on several different antidepressants for treatment. I did my own research on line and brought the diagnosis to my doctor.

Over the last 26 yrs many more people have been diagnosed with CFS & EBV so I think there are more people aware of it just due to this. I often here "oh yea my friend has that", or "my mom has that". Unless someone close to you has it, people do not understand. Even then they have to see first hand the daily limitations in someones life.

A big challenge is with doctors to this day. Just earlier this year I had an ENT tell me that there was no such thing and that I needed cognitive behavioral treatment with a psychologist. (Oh how I wish it were THAT easy!)
Work colleagues are always a nightmare because if they see you getting any special treatment or that you're taking any liberties, they resent you. No matter how old they are, there's always a resentment that causes issues. You look normal so they want you to work like a normal.

My mom & sisters get it because they see a vast difference in who I once was and who I am today.

 

[ScottTriGuy]

Hi John,
Big hug to you for taking this on!

I concur that "CFS" is already negatively branded. I personally use 'myalgic encephalomyelitis' coz (PEM is my primary symptom and) it sounds impressive - mostly people ask, "what the heck is that?"

So now I've got their attention - I then say 'its on the spectrum with multiple sclerosis and other autoimmune disorders' - and maybe add in 'that some docs call it atypical MS'. This often gets empathic responses.

In my experience doctors have done the most harm to me. This is a very common experience among this patient population. With that in mind, perhaps a campaign geared toward education of doctors - they hold much of the power of our health in their hands. I'm partial to shaming as an effective approach contrasting their treatment of me/cfs patients with research results.

Something like:
"The only thing in our head is inflammation" #DoctorsDoingHarm

 

[Karena]

I appreciate your desire to design a marketing campaign to help CFS patients. But the task is a lot more difficult than it seems. For some reason, people have trouble understanding this illness. Maybe it's because everyone is tired. Maybe it's because the medical profession has spent so many years dismissing us.
As others have posted, a campaign that focuses on belief and patients' feelings might backfire. People with "real diseases" like cancer don't have to beg people to believe them. Treat us with the same dignity you would treat anyone with a serious, debilitating illness.
I would like to see more publicity and emphasis on the facts--scientific evidence. You could also show examples of how this disease has impacted our lives. Talk about why we can't work anymore, or why we can't go on family outings. Once someone knows the facts, maybe he or she will say, "I understand.
I would rather have understanding than belief.

 

[JennyJenny]

Oh, and what other illness can simply thinking exhaust you. Reading. Playing a simple match 3 online game.

 

[Lissa]

Oh, and what other illness can simply thinking exhaust you. Reading. Playing a simple match 3 online game.

Yes! I am exhausted trying to read this thread... And I'm slurring my words horribly trying to read parts aloud to my husband. I have plenty to contribute, but not tonight--- too exhausted to chime in!