Facing Skepticism From Others That My Illness Isn't 'Real' - blog

https://themighty.com/2017/04/chron...ronicFatigueSyndrome_Page&utm_medium=Facebook

eta:
sorry only just spotted this was from April 2017

 

The dual aspects of ME are a very heavy and painful burden, as the writer in this article says.

One often has to go it alone, or with a very few beleaguered supporters. ME is very isolating for the pwME, and often their supporters.

ETA:

Early on, trying to maintain some respect and belief from friends, family and colleagues, I gave them scientific articles about ME.

This only seemed to add to the disbelief. I think it's like denying one is an alcoholic. As some say, that's a sure sign of being an alcoholic. Not necessarily true of course. Maybe in some people's eyes a sure sign of being delusional about having the physical illness ME, is handing out scientific literature on it. They probably threw it in the garbage, shook their heads and wondered when I was going to come to my senses.

 

I don't know about others, however, I do suspect many become buttoned up about this illness, and try to pass for well when out and about, especially in meeting new people, or in more surface interactions, e.g. in stores and banks.

Not spreading information about this disease doesn't help with the public's knowledge about it.

However, when faced with as many derisive comments and actions as our community suffers, it's not surprising we try to pass for well, and keep quiet about our real life.

Because I can sometimes go out and about, I feel like I am passing for a healthy, "normal" person, but inside I may be concerned about the OI I am feeling, and can I make it through the excursion without fainting, or otherwise spazzing out.

I seem to pretend health well enough that others who know I am unwell, think I'm making too much of my symptoms.

They don't see me collapse for days with PEM after this effort.

I'm damned if I tell others about ME, and damned if I don't.

 

'Adam Ruins Everything' has a great segment on this. When people are presented with ideas that challenge their current belief system, their strategy is often if not always to double down rather than re-think their original position.

The more deeply entrenched the belief, the more it is incorporated into how they think of themselves as a person. The more that's the case, the more questioning the idea makes them question who they are.

There are few human needs felt more keenly than the desire to think of oneself as a just, valuable, clever, above-average human being. Anything that questions who one is as a person brings on a feeling of attack and assault. So therefore any deeply-entrenched idea they hold is right and others are definitively wrong -- and also bad people.

Any attempt to throw masses of evidence at a person aggressively is doomed to failure. The greatest potential for change is through frequent, self-guided discovery of evidence to the contrary.

 

I'm "honest", so I don't want to pretend I'm ok. I already was accused of faking to be sick because of this.

 

QUOTE="Inara, post: 144964, member: 62"]I'm "honest", so I don't want to pretend I'm ok. I already was accused of faking to be sick because of this.[/QUOTE]

I find talking about ME and my symptoms to friends and family a real dilemma. Many continually and completely dismiss my illness as imaginary; some are nasty and abusive. Some permanently refuse to talk to me. One who said it must be nice not to work did come around once I gave them a little bit of government literature on ME. Even people who seem to believe me end up thinking I'm imagining my symptoms. Of course if one discusses this then others have all kinds of cures to recommend including two who said I should get my hair done. A completely astonishing view of a very serious physical disease.

I do find that telling most I know about ME and it symptoms just doesn't wash with them. But, if I don't tell them anything they think I'm well, capable etc., and can do what they can do. Which of course is a problem as well, as you say.

As far as being out and about among strangers, I just try to get on as best I can, which in essence means I hang on until I can get home and rest. So, this could be called trying to pass for healthy.

As for those abusive, nasty rellies and "friends", either I have chosen not to experience ongoing abuse from them, or they have chosen not to engage with me. ME, as we know is very isolating.

 

Many do have a very limited view of what constitutes disability. That's why when presented with someone who can walk and talk, and seems to comprehend, they don't believe that ME exists. ME is invisible. They certainly wouldn't believe it's disabling.

 

Screw 'em.

There's a PhD thesis in the constant suggestions to women with debilitating illness being that they pretty themselves up a bit. There's something significant in that constant demand for outward-facing femininity.

1. Can they honestly believe -- even subconsciously -- that illness is due to a failure to appropriately perform the feminine role? And that 'performing' traditional femininity will fix sick women? Here is a woman writing an article that is making that very argument:
   https://twitter.com/user/status/1036391527797293056
   
2. A reinforcement of the constant demand that a woman's presence be decorative and performative: being sick means you aren't being pleasing. Resume being pleasing, or forfeit your right to be seen in the public space.
   
3. A logical hiccough: well people tend to look more put-together. Therefore, if you look put-together, you will be more well.
   
   
4. "I don't like thinking about sickness. It reminds me of death, and that means that I could die. Please do your utmost to erase all signs of illness so I may be more comfortable."

There's an intriguing blog about why women might 'play along' and pretend to be well here: https://laurachamberlain.co.uk/2016/08/05/but-you-dont-look-sick-a-letter-on-why-i-hide-my-illness/

 

@JaimeS

Thank you for your comments. I read that women incarcerated in psych wards are perceived as recovering/recovered if they want to put on makeup.

The PS brigade have said "cfs" is women's reaction to the stress of dual roles, or the pressure of the traditional role vs. the the working outside the home role; modern day role changes for women - something along those lines - can't specifically recall.

Being sick not only means you can't be pleasing, but by extension, can't be depended on, one is unable to be at everyone's beck and call, as many women
are trained to be.

And, you are right, if people insist on being nasty and abusive to pwME because they have ME, screw 'em!

 

@JaimeS

Interesting article. When I'm out and about I want to do something normal. Go for tea, shop for groceries, see a friend. It's wonderful to have a glimpse of life as it used to be, but it also reminds me what life used to be like. Things we used to take for granted as routine, simple, not challenging at all. Things that used to be normal, even if banal, occupied our to do lists. Things not even remotely related to issues such as losing one's home due to illness and job loss.

 

I've explained it so often that I now have an 'elevator pitch' that explains the disease.

Phrases that generally 'work' when explaining to bright laypersons:

• I start by naming it: myalgic encephalomyelitis, ME, ME/CFS
• Relapsing-remitting and neurological, a lot like MS
• Symptoms in a lot of body systems -- anything that causes issues in the brain will be this way, because the function of the brain affects every system
• Name-drop. "Stanford is doing some interesting work right now... Harvard is doing brain studies..."
• Findings on MRI in the brain -- white matter hyperintensities -- ANS stuff, cognitive issues -- immune cells low-functioning -- onset often post-infectious but it seems like "any immune challenge will do". Genetic, with first-degree relatives much more likely to be sick as general pop
• I say my mother and sister also have/had it and that we contracted it at about the same age, not the same time.
• Metabolism issues. I talk about how I don't "run well" on carbs, and if they know science, I talk a little bit about glycolysis & 2-day CPET
• 25% housebound or bedbound, twice as common as MS, funded many, many times less
• More debilitiating on average than MS, renal failure, many kinds of cancer
• In the US I do THEN use 'chronic fatigue syndrome' AFTER saying this. It has a remarkable effect: the listener realizes, without you saying anything, that the disease is seriously misrepresented in popular culture as being a minor nuisance. You don't need to 'teach the controversy' at all. (People trust conclusions they come to themselves a great deal more than ones you thrust on them.) Don't wait too long into the narrative, though, or it seems like a trap lol.

What often doesn't work or loses people:

• Discussing the illness has been psychologized -- it's 'pitching for the other team'. (There are major exceptions to this rule, especially if the person advocates for something else and could grok this. But major stumbling blocks too, beyond the scope of this post.)
• Throwing lists of SYMPTOMS at people. Keep it to the objective science.
• Leaping into the dark stuff swiftly -- like higher rates of suicide or institutionalization, death or unimaginable suffering... people will just turn off.
• Making it personal. People find stories of their own suffering compelling, obviously. We care about ourselves and we should! But the general public isn't satisfied by these stories or compelled by them unless they end in an uplifting way. (You can see general public asking: but what was the point of that suffering unless there's some kind of happy ending/reward? Life Doesn't Make Narrative Sense, but stories you tell have to.) I can see people's eyes glaze over when people launch into narratives re: their own, personal suffering... unless they are a skilled storyteller who can pull meaning for their audience. (This is part of why I spoke about my mother's and sister's experiences with ME in the SF rally... not mine.)
• Any uncertainty. You can say "we find lots of abnormalities but we're not sure what the original cause might be". But don't discuss how scientists debate or the nature of that debate: they don't have enough background to draw a conclusion that makes sense with the available data. Most go Blue Screen of Death instead, and presume that no one knows anything -- that a lack of consensus is the same as no information at all. Actually, clinicians are the most susceptible to this out of any group, so this goes double for them!

Just what I've learned. YMMV!

 

Oi, how could I leave that one out? For sure. A woman is supposed to always be prepared to help out, to the point that we do it without thinking. At our house party last night, my housemate (who had thrown the party) said to me three or four times, "you don't have to do that" or "thank-you for helping out" and once reminded me I have ME. So darned automatic & ingrained at this point. I have a burning neck and a vibratory feeling today to remind me that I was being a real Product of My Upbringing yesterday.

Yes! Sometimes we pay the price, gladly.

 

@JaimeS

Thank you for your suggestions of how to talk to people about ME. They are helpful, and some of them are familiar. I find that name dropping famous institutions such as Stanford, Harvard, Columbia etc. Make a good impression. The brain studies, and comparisons to MS also help explain this. But, normally, now I don't get into this discussion with people. I've had ME for over 3 decades. As you know, back then there was much less biomedical research, and the PS crowd had pretty much no push back from real science. It was truly a dark age for ME. By comparison, there is more light now.

I use these, and similar points in advocacy
letters.

I think your suggestions, which are excellent, should be a separate thread - maybe called something like "What to say about ME".....

 

Phoenix Rising had a recent update to its display that made me briefly think I'd lost all my bookmarks. I tend to bookmark my own and others' posts when I think we've come up with some kind of clever or funny thing that will have some kind of utility later.

I have started going through all of mine and am considering making them into blog posts.