Photographs of CFS

[Purple]

I think it's very hard to get an illness - any illness - across in pictures. Videos can do a much better job.

 

[Mithriel]

My son took this photo and I use it as my profile picture. It describes how I feel inside. Sad, tatty, with my stuffing loose, pains all over and trapped.

Mithriel

 

[Nielk]

Did your son stage this? I'm impressed. I love the way there are so many needles in the head.

 

[taniaaust1]

This floors me. I can meet people and see they have this or fibromyalgia. There is a look on their face that no one else has, a bit of shell-shock and disbelief and tiredness. I've gone up to people I've just met and discreetly begun a conversation and sure enough... they are living this. Why can't others see it?

I can see it with many others too. I discovered that one time while I was part of a study and I could actually easily tell those in the waiting room who was in the control group and those who had the ME/CFS, I was surprised just how easily I can tell. pale, bags under eyes, dark circles under eyes (looking like they havent slept for a week).. and of cause the tell tale slouching due to feeling weak, our body postures are dreadful.. some move around in obvious discomfort just from sitting on a chair.

Thing with us compared to others, we know what to look out for. There are thou the occassional non sick people who can tell (my current support worker is great with that, she could tell when going downhill from the start..observant of my slight shakiness which others usually miss and has actually seen it in me before Ive noticed it myself).

edit.. I forgot to say but someone else mentioned it.. i also get a blank look on my face when my brain has been overwhelmed and goes into shutdown mode, some people can notice that.

 

[Jarod]

Maybe a cartoonist would do the trick?

I would show a person clean shaven and neatly dressed, walking their dog on the beach one day....

THEN....Two days later, show them on the couch, wiskers, in wrinkled clothes, dirty dishes, mail piled up, vitamins delivered by the folklift/pallet from UPS.... With 25 messages on the message machine, Struggling to remember when the next doctor's appt is....

The "fatigue" in the name is kind of misleading for some of us....I know some are bedbound though and that's a bummer.....

 

[Mithriel]

Hi NeilK,

My son did this for his photography course. His pictures were all weird and his lecturer hated them
It was not done to represent ME and the family went quiet when I said how much it meant to me. They don't want to think I fell that way.

If you google emily collingridge there are pictures of her which describe ME, she doesn't look at all like someone just lying down. Her picture is the heading for the 25% group.

Mithriel

 

[LaurieL]

Hows about taking individual pictures that depict the symptoms and experiences of us? And making a portrait? Someone pale, with bags under their eyes, and then the opposite, red-faced and overweight. Someone unable to climb stairs, someone unable to figure math problems, someone unable to get out of bed. The extreme tiredness and the looks associated with it, on, and on. Mesh it with word portraits, of the theories. Brief. Stagger those snapshots with the theories and findings with the looks commonly associated with these. You could make one hell of a poster portrait with these, although it would take quite a bit of cutting and editing......and not everyone would agree with what was depicted, so you could do a set, instead of just one. It would also cut down on size if you did multiple instead of one portrait poster.

LaurieL

 

[Undisclosed]

This really resonates with me. I can't count how many times my family has told me I look good which means to them if I look good I must be feeling good. When I look ill which I do at times (mostly a grey pallor), they ask me if I am coming down with something. When I look tired they ask me why I am not getting enough sleep. If I say I am feeling dizzy, they ask me if I have eaten enough. If I lose my train of thought in a conversation or lose my basic grammar skills, they have to make rude comments and correct me. If they can't get it in real life, I doubt a photo would do anything to get them to understand how monumentally crappy I feel day in and day out despite my outward appearance. The only person who actually can tell how I am feeling is my husband and that's because he knows me well enough to read those subtle and not so subtle cues that I am about to collapse, or that I am in extreme pain, or that the environment is pushing me into more symptoms. He's seen me walk through the house holding the walls. He's seen me sit down in stores because I can go no further. He's taken me to the hospital a few times when I have collapsed. The rest of my family doesn't see this and judges me by appearance alone. Arghhhhhhhhhhhhhhhh. It's just like when my daughter is expected to behave normally etc because she doesn't have any physical signs of her disability which is a result of brain damage. Arghhhhhhhhhhhhh. The way one looks is not really a good indicator of extent of any illness/condition.

If we have a picture of a person with ME/CFS who looks incredibly sick, people with ME/CFS who don't 'look' sick would likely still be discounted. I don't believe there is a single image out there that can actually be a good descriptor of ME/CFS. Well actually, a few years ago I came across a photo display of people with ME/CFS before and after diagnosis and some of the differences were jarring but I can't remember the website and I can't seem to find them by googling.

 

[Sasha]

Actually if it was even a photo of someone lying down in bed during the daytime I'd be happier. It's the photos of beautifully made-up and coiffed women (as though we have the energy to maintain that kind of grooming) in immaculate clothes (ditto) in an office (as though most of us can keep working)...

 

[LaurieL]

Kina,

I can't count how many people have said the same thing to me. Family is different. They don't want to see illness, they don't want to imagine life without you or any threat there of, and they just won't see it if it doesn't walk up and slap them into reality. I did that when my mom was sick, not out of spitefulness, or lack of empathy, or even stupidity. I did it because I loved her so much, that to imagine her not being their, well,....I couldn't. Its a sort of selfishness that I can't really apologize for, even though now, I would have done or said some things differently.

Those of us whom, still "look" good to the general population are lost again when represented by photos of those bedridden, and are obviously ill. Even though some of us have been bedridden at one time or another. There are many faces of ME/CFS, we need the general population to recognize them. I like the before and after photo idea too.

LaurieL

 

[Andrew]

I've been looking at professional photo resources, seeing if I can find a photo that conveys how I feel. I've only found one that had enough emotion. It's of a cancer patient. But not exactly what I want. So I'm still looking.

 

[Allyson]

A photo then with a capation: Waiting to have a life again. ?

yes good idea and this is what is happening on fb now Alex

lots of little memes with and image and a short caption.

SOme of them are comic which i think is agret idea as you can share them generally on fb without thinking you are going to get everyone down (and so then they start blocking them)

The other thing one society is runnig - not sure who now - is a good day bad day campaign

two photos - one aon a good day of you looking healthy. the othere how you look on a bad day.

this is a good idea to show how sometimes we ARE OK but that does not mean we are not ill.

Unfortunatley you can t copy theses fb memes to this page and other fourms - or post them here.

 

[Allyson]

Hows about taking individual pictures that depict the symptoms and experiences of us?


LaurieL

And yes, Lauriel some of these do deal with just one symptom at a time and that is good

easy to digest and you can send them out every few weeks or so

eg, loss of balance....

 

[Seewell]

Great thread
I get up in the morning most days and look in the morror only to see my usual M.E / looking like cr~p self.
Put occasionally i get up and look in the mirror and see the old me.
But no one else can see those changes, only me.
Dont think its possible for a picture to show the torment going on inside.

What about this pic with the words below it
http://www.guardian.co.uk/commentisfree/2012/mar/30/me-emily-collingridge-chronic-fatigue-syndrome

 

[Nielk]

How about a picture of a white ceiling with the caption: "this is the view for most severe ME/CFS sufferers"

 

[Wayne]

This floors me. I can meet people and see they have this or fibromyalgia. There is a look on their face that no one else has, a bit of shell-shock and disbelief and tiredness. I've gone up to people I've just met and discreetly begun a conversation and sure enough... they are living this. Why can't others see it?

Totally agree GracieJ. I've noticed for decades now what I call "the look". I almost always see it in the eyes -- the pain, the exhaustion, and more (sort of undefinable in a way). An article that was posted on the ProHealth board talked about a husband and wife team who have been long-time advocates for pwCFS. As soon as I saw the accompanying picture of Bob, I knew IMMEDIATELY he has had CFS (long-term). Here's a link to the article and picture:

ProHealth is Proud to Announce Bob and Courtney Miller as Its First ADVOCATES OF THE YEAR

 

[Undisclosed]

Totally agree GracieJ. I've noticed for decades now what I call "the look". I almost always see it in the eyes -- the pain, the exhaustion, and more (sort of undefinable in a way). An article that was posted on the ProHealth board talked about a husband and wife team who have been long-time advocates for pwCFS. As soon as I saw the accompanying picture of Bob, I knew IMMEDIATELY he has had CFS (long-term). Here's a link to the article and picture:

I can see it in others too, why can't non-patients?

 

[Seewell]

Know this dosnt help with the photograph question
But just wanted to add,as Taniaaust1 said on my worst, confused,brain fog days others can see it written
all over my face.

I could see it in that guy Wayne..

 

[Nielk]

Know this dosnt help with the photograph question
But just wanted to add,as Taniaaust1 said on my worst, confused,brain fog days others can see it written
all over my face.

I could see it in that guy Wayne..

Talking about brainfog, here is a picture from: www.facebook.com/MEAwarenessPics

 

[Seewell]

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