The ME/CFS Society of NSW Inc.

Hi Maribel,

I have analysed this myself and I really think you should stick to whatever you feel comfortable with.

Depending on all the variables of who I am talking to (how long I have known them, how much time we have to talk, how genuinely interested they are etc etc) I do vary my answer. A lot of the time I say that I have CFS but will most definitely explain - on their level - what that means. I think it also depends on what you believe is going on in your body. After listening to and working with my body for some time I know that my immune and adrenal gland systems are weaker than normal. Sometimes I talk about this. I am even happy to delve into the unknowns of CFS if we get that far. I often find giving people a rundown of your typical day can be helpful. I do have a radar though - if I feel that their response is negative I will either - depending on my emotional / physical state - remain very calm & assertive or I will close the conversation and leave the situation. I will try and protect myself above everything else. I have learnt that from this illness. It doesn't always work but when it does that is positive. If I really trust someone and they are genuinely interested I will delve deep into the story of how I believe I got this illness and how I am slowly getting out of it. That for me includes the physical, emotional, mental and spiritual.

I have found though that I will intentionally avoid people who are not understanding or have responded negatively. I live in a share house with 4 other people and it has not been easy. I had one flat mate who would often make tactless comments which showed her complete lack of understanding and empathy. I did avoid contact with her because it was not in any way healing to my soul. For every bad there is good to equal it! I have another flat mate who never presumes, always delicately asks at appropriate times and treats me like a normal human being! So people can always surprise us in all ways

[/i]I also forgot to say that on occasion [i]I refer people to literature or websites like this one.

I just can't help myself this afternoon - I have the typing equivalent of verbal diarrhea!!

Good luck Maribel - and remember above all follow your gut and protect yourself

Hey Maribel

I tend to tell people only if they ask. I used to mention it much more frequently but found that I generally didn't get a positive (or neutral) reaction. I now answer based on how I'm asked. If the person seems genuinely interested, I'll talk about it, but if they are just a bit curious as to why I keep walking into them I'll keep it brief and carry on. I tend to treat it like a dodgy knee or a bad back or something,

I tend to use something like this, depending on the situation and how I'm coping on the day:
"oh yeah, I've got CFS, this happens sometimes. [insert some sort of friendly-but-annoyed-at-my-body facial expression here] Can you give me a hand up? Ta. So, what are we doing now? I'm not sure how long my legs are going to hold up so important things first, OK?"

Of course, that type of response works better when you are at a stage that you can (for the most part, anyway) pretend that you are healthy. If you are bedridden or scooting about in a wheelchair then that would have to be a bit more serious. Still, I do like to move the topic on fairly quickly to something less threatening. People are just no good at talking about sickness, especially to sick people. If you move on to some lighter topic, they'll digest the information, and watch your actions to try and sort it out in their mind. Often, they'll ask a follow-up question later based on how you are coping and then you can give them a bit more and then back off again to let them process that.
Where you go from there depends on the person. Some will be interested in the illness itself and google it for hours, others will only be interested in you and how it affects you. Some will have had an experience with it in the past that was negative and immediately judge you as something you are not. They are tough cookies, so leave them be and just carry on (which tends to be the best way to convince them that they might want to re-think their position too, so it isn't to be looked as as chickening out or anything like that ).

I've never really seen the point with the ME thing. If nobody can say it, nobody will feel comfy talking about it, and we WANT people to feel comfy discussing it openly. While I'm sure that there are many people out there who cringe at my lack of activism on this issue, I just don't have the oomph to go there, nor do I really see the point. Most times when someone asks, they just want a bite-sized answer to explain the situation and CFS is a known term that they are likely to have heard before. Simply changing the name is not going to make the illness any more or less serious than it is.

Really, it is all about what you feel comfy with. You are the one in the moment, you get to choose how you handle each unique situation

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Abbey - ME/CFS Society Web Admin

Yeah sometimes keeping it lighthearted is a good way to go- but what I have started doing is taking the cfs info flyer I got from the society with me if I am going to say a centrelink interview (not that they're really interested in generic info that's not from my doctor tho) or other situations social or otherwise where I think I might be asked to explain it - I can just hand the flyer over- then I don't have to explain too much, plus it looks more official and believeable than anything coming out of my mouth.

You're right Abbey - people are no good at talking about illness! And it's always the one's who have the least experience with illness in general (whether it be their own experience or that of a family member or friend) who have so many simplistic and patronising opinions about illness, and say stuff like 'I think illness is all in your head anyhow and can be controlled by the way you think. it's all emotional' Man I haaaaaaaaaaaate that! Of course you'll feel worse if you're emotionally a mess, but your emotional state is not the cause of all illness! As if you like being sick. Anyhow!

It always astounds me that people (like Maddie has mentioned here) just decide they 'don't believe' especially when you stand there with an official diagnosis from a doctor- or even more suprisingly from a really well known and regarded immunologist who writes in medical journals! So some person with no medical knowledge or credentials whatsoever decides they don't believe. Ok the doctor is making it up then?! Seriously leaves me at a loss.

I read an interesting article my mum gave me a while back - a transcript from ABC radio when they had a special on CFS. I loved one of the things one of their guests said - he said that so far CFS doesn't have an (accepted) bio-marker, and compared that to the fact that neither do headaches. No one questions whether headaches exist now do they!! I'll try post the transcript in a new post.

My fibro is worse than my CF so that makes it easier, in that i usually say "i have a back problem" and leave it at that, if i go into more detail later on i say something like "i have this rare muscle condition that makes my muscles sieze up/stop working" or something along those lines. nobody i have met in ordinary life has heard of fibro (other than medical people), which i like since that makes it seem more exotic. i never mention CF, unless it is someone i know really well and i also know they do not come prepackaged with the idea that it is as an imaginary condition.

I also get annoyed (about people not believing these conditions are real), one answer i think is to realise and, as much as you can, accept how much people authority people attribute to the formal medical system (and all of formal, traditional science). Which in a sense they can't help, unless they happen to have had some experiences in their own life that allow them to understand. So its not their fault, its the fault of "The System".

Specifically, it seems to be whether or not there is a definitive, "scientific" test (or set of tests) that can tell whether you have a condition, or not, that determines if it is regarded as "real". I read recently that before there was a proper test for lupus, that most of the medical community did not believe it existed, even though people died from it all the time. So if you have ever had the thought that if you were literally actually dying from your condition, maybe then people would take you seriously, the answer is: nope, even that would not be enough.

People usually imagine other people as having similar thought patterns to those that they have themselves, or can imagine having. Therefore, someone who thinks people are lying about having an illness either would do something like that themselves (lie), or at least think of lying in that way as being something that is in some way beneficial enough (why else would you lie other than it is giving you a benefit). Therefore, to be in a position where they actually view (at least partially) giving up pretty much everything normal in life as something beneficial, in that it must more enjoyable to live the life of a fibro/CFS sufferer than to live a normal healthy life - they must have a pretty extreme amount of misery/frustration/unhappiness/etc (even if not apparent on the surface) in their own life. So you can feel sorry for them, which helps deal with the anger. I have learned that this idea can also help with feeling sorry for yourself (which is easy to do when you are stuck at home with not much of a life) - in that many other people's lives are so often not as enjoyable as they seem like when looking on from the outside, so thinking like this can kind of even things up a bit in your own mind.

Simon

Hi abbey and all,
I find the fact that we all have to justify and explain sole destroying...
I have actually written a poem about this (poetry is my therapy) called "Pain of Disbelief" being that as bad as the pain and fatigue is that the disbelief is the hardest part of ME/CFS to deal with....and only my fellow suffers can understand this ..... this is why this forum is so important ....just knowing others are out there who understand....
take care .....Diane