There is a stereotype for people with ME/CFS and related disorders that is based on the view that we are just pretending to be sick. This varies from accusations of blatant fraud to a pathological need for attention. The infamous biopsychosocial view of ME/CFS is a variant, in which we do not intentionally pretend to be sick, but our mind plays games with us and makes us think we are sick. Any symptoms we may have, though physical in nature, are claimed to be orchestrated by the mind.
An even more ludicrous view is that ME/CFS is some form of mass hysteria, which "explains" outbreaks. The extreme flaw in this view is that so many of us had not even heard of ME or CFS before becoming sick, yet our symptoms are basically the same, right down to the molecular pathology. Enough said about this view, it is absurd.
The biopsychosocial view frequently makes the claim that ME/CFS arises from exercise avoidance and deconditioning - yet the physiological evidence does not support a deconditioning hypothesis, and nearly every ME/CFS patient I have talked to started out overdoing things, continuing to exercise, to achieve, to perform, and found themselves in an aggressive and debilitating push-crash cycle. Of course we now have some knowledge of the molecular processes involved in this, we can now prove the physiological impairment following exercise.
There is an old claim that I think might go back to the ancient Greeks that says we wear masks (roles), views of ourselves that we portray to the world. In various situations we portray ourselves differently, depending on our role - employee, friend, lover, adversary etc.
I wish to discuss my own experience with masks. I have heard similar stories from more than a few patients, so I don't think I am alone in this view.
"I can do it"
Which brings me to the most important mask, the "I can do it mask". Back when my mild ME/CFS progressed to moderate, I was really struggling with activity, including work, dating, and exercise. One of the most insidious views in society, which has the admirable purpose of enhancing productivity, is the work ethic. We can do it, we can do more! So many sources, including my own upbringing, gave me the message that I need to do more. I was unfit, so the solution was to become fit. I wanted to do more, so the solution was to push myself harder.
I took on this role and attempted to increase my fitness many times. I "soldiered" on with work or study long after I could not cope. I kept telling myself I could get fit, if I was careful enough, persistent enough, but somehow it never worked. Every doctor I talked to with one exception told me that I needed to exercise. So I did. While this was happening my illness kept sliding from mild to moderate to severe. My pain levels followed the same progression. When I was at my worst my mask slipped away. I had become an automaton, permanently exhausted, barely capable of thought, reading or walking, with regular episodes of syncope - I could no longer maintain this mask. This mask is an illusion we tell to ourselves, to fit with societal norms. It is supposed to help us - but my experience is that it is one of the most damaging strategies we can pursue.
The "I can do it" mask that society foists upon us, and we willingly adopt, is in my view the main factor in turning mild patients into severely disabled patients.
"I am fine"
The second mask is the pretence that we are fine. One of the reasons we are vulnerable to the work ethic mask is that we feel compelled to project the view that we are fine, we are normal. Normal people put in a hard days work. To receive acceptance we must look and act normal. It is peer pressure for both adults and children. When I was young I kept commenting that I was tired. I had no other name for it. I was told, consistently, by everyone, that I could not be tired. I was even accused of being lazy. Eventually I stopped telling people I was tired.
When the general public ask me how I am, I tend to answer "fine". If they know a little more about me, it is "fine, considering" or "same old same old". In order to cope with my symptoms, I tend to ignore them. My bad memory also has me forget most of it. So even in a doctor's office I can forget what is wrong with me, for whatever reason. Because I psychologically downplay my symptoms, a simple survival strategy, I can basically lie to myself about how bad I am, pretending I can cope even when I can't.
I have heard of patients who try to clean their homes before home help arrives. I can understand the impulse. We want approval, we don't want people to see behind the mask and realize how sick we are.
This then follows through to what I tell my doctors. I select what I think I should tell them, there is never enough time to tell them more, and generally they show no interest when I do. So they see the mask of the chronically fatigued patient, and very few dig deeper to see what lies beneath that. To them we wear the mask of "medically unexplained" which is just another illusion society puts on us - we can explain much of it, but still lack a definitive cause.
A huge part of the presenting an "I am fine" mask to myself is due to my flawed sense of wellbeing. I frequently feel I can do more, even a lot more, and I certainly want to - this is separate from the "I can do it" mask. Only years of experience, and the occasional bad mistake even now, give me the understanding that I can't do it - my brain is deluding me into feeling kind of OK, but this mask is shattered every time I believe it and act as though it were true.
This second mask has an unintended consequence. I have generally been very open with my illness, ever since 1989, but lately I have been trying alternate strategies, a social experiment if you will. Some people have been told I have a neuroimmune disease. I am watching how this is playing out.
Many of us keep out of sight, and for very good reasons. We are often too sick to cope with the stress of dealing with the social disaproval that comes with haveing ME/CFS. We are also often too sick to keep explaining to people, over and over, exactly what it means to have ME/CFS. Over the years a number of people have come up to me and said "I have CFS too, I wanted you to know, but please don't tell anyone". We have become social outcasts, but I don't call this a mask - this is not something we portray, it is something that society does. As quiet outsiders, hiding in the shadows, we have no voice. We can't fully engage in the politics and fight for understanding and fair treatment. Just coping with the day to day necessities can be enough to push us over our limits.
There may be nearly thirty million of us (I am deeply suspicious of the seventeen million claim, it is probably way out of date). Yet only a few thousand seem involved in advocacy. To have a voice, a chance to make a political difference, we require hundreds of thousands of voices. Yet the implied message from some medical and social sources is that we are somehow doing this to ourselves, that we don't deserve anything better. There is also confusion due to the myriad different definitions that have been foisted on us, and the myriad claims that go with them. Confused and demoralized, we are kept docile and subservient. Patients are even told by some authorities to avoid support groups. These may be classic divide and conquer strategies, and if so they have worked. To me it is blatant manipulation of a socially disenfranchised group, but I fall short of calling it a conspiracy. To me this is a systemic problem, not something coordinated, although I do think that some individuals do this consciously.
If it were not for the internet I would have no voice. I am mostly housebound, heading toward fully housebound. As a shadowy figure behind my computer screen, I can present yet another mask to the world - ME/CFS advocate. This is one I approve of, one of the very few. Alone and isolated, I have very little impact by myself. With a few thousand of us, we have some impact. It is not enough.
It is a sad state of affairs that in a world that blames us for pretending to be unwell, we are actually pretending to everyone that we are more well than we are. We are blamed for not doing enough, when most of us are doing too much. There is something deeply ironic about this, and it is a source of much of our frustration and anger.
We wear these masks because they seem to help us cope, but they also hide what is happening to us. Indeed, the "I can do it" mask stops us from seeing how damaging our attempts to keep up really are. People don't want to see what is wrong, but if we are not prepared to show them what they do not want to see, we will never have our issues recognized.
We may not be able to strip away all our masks in the real world and still cope. We do need to strip away the masks that are blinding us to our need to be active in our own self interest. We can continue to present masks to the world in order to cope, but if we are fooled by our own masks then they are hurting us, not helping.
Wearing the mask of an ME/CFS advocate and armchair philosopher
PS A video for awareness week that also talks about breaking down masks:
50 experts and 171 advocates oppose the HHS/IOM Contract to re-define ME/CFS.
Check out our IOM Contract Forum for the latest news and to join the campaign.
Demonstrations in San Francisco Dec 9th and Washington D.C. Dec 10th
Blog entry posted by alex3619, May 12, 2011.
About the Author
I am a long term ME patient with many complications. While I have pushed research advocacy since 1993, I become political around 2009. My current project is a book called "Embracing the Null Hypothesis". The hypothesis that is unsubstantiated is the idea that CFS is due to dysfunctional beliefs.