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TheChronicSituation writes about how choosing to live hidden behind even a partial mask can seem easier, especially when it saves on bothersome explanations. But, at the end of the day, pretense can come at a cost - nobody really knowing who you are...
To what extent do you need to hide your illness, how you are feeling, or the person that you have become? Is it always necessary to tell someone about CFS/ME in every situation?
The majority of people I know, don't know that I have CFS/ME. In a way, I feel that I am lucky that I can pass for a healthy person. I am not so affected that I am prevented from being out in the world, at least part-time.
I live here in the west of Ireland, work about half a week, have an occasional social life, travel at times, have some level of functionality.
And it is not as if I have been deliberately hiding anything. It's just that with people that I don't know really well, it just hasn't come up.
I meet them socially, or in a work setting, and, because I have been managing this condition for so long, I have usually rested enough to be able to function more or less normally, at least for an hour or two.
Though it is true that I am not overly revealing about my state of health, it sometimes seems like too much work: telling people about CFS/ME, having to explain the ins and outs of the condition, how it effects me, the causes and treatments, and all of the politics of it. Even contemplating an explanation is exhausting.
And, it is so easy for them to misunderstand when there is so much misinformation out there. They might have half-heard about one misguided report, in a prominent national newspaper for example, which has happened often enough, and be led to believe that I am some kind of crackpot.
There is also the fact that if people don't know that I have this condition, then for the time that I am with them, I can pretend. It gives me a space where I can be, at least temporarily, how I would be if I were well.
So I think that that is the key. It's almost as if, if people don't know about my condition, then I can, for a short time, be as they see me, a reasonably active, healthy person.
Yet the truth is that I am playing a role. There is this whole other truth about my life that casual friends and acquaintances don't know anything about. They don't see my periods of exhaustion, or don't realise that if I meet them in a pub then I have rested a lot of that day to be able to make it there.
I am a half-ill, half-well person, and most of the people I know only see the healthy side. And that in itself is a difficulty, as it limits how close I can be to people if they only know half of me.
But I don't see a good way around this. If I do manage to summon the energy to go out at night, or to any kind of social event, the last thing that I want to be talking about is CFS/ME. And so, in my day to day life, the opportunity simply does not arise to talk about what is in essence the most vital part of my story.
It's probably best to illustrate this with an example: I was in a pub, drinking my usual bottle of still water, and chatting to this girl I know casually. She mentioned that she had done the Camino de Santiago, which is an ancient route where people walk twenty kilometres a day, on a journey through northern Spain; and she suggested that I do it.
The whole thing is six hundred kilometres, and takes about a month on foot. I simply smiled and told her that it sounded like a good idea, that I must keep it in mind. I couldn't even begin to explain to her how utterly impossible even the idea of this would be for me.
The full explanation of why this would be out of the question would have gotten me into all kinds of areas that I didn't feel like getting into at that moment, and would have been inappropriate in the setting that we were in. And it is also true that many people feel uncomfortable discussing or hearing about illness.
Sometimes simply explaining the condition takes more energy than I have available. I find it is often easier just to pretend to be what I seem to be: a normal, healthy-looking - though unknowable - person.
So I go on like this, living an almost secret life. I imagine that to a lot of the people I know, I must appear quite opaque, someone who is all surface and no depth. I think many people wouldn't really be able to grasp the idea of me as someone dealing with a chronic illness when they see me as someone who teaches, who has a social life, who in fact arranges events for a voluntary organisation I am involved with.
CFS/ME is just not something that I feel I can explain in a few sentences to someone I don't know well. The impact is too enormous. So this is the way I am now, living my private, reduced-life at home where I rest, and pretending to be someone that I am not when out in the world.
At times it appears surreal, and makes me feel a bit detached from those around me. But I can't see another way of approaching my everyday life.
TheChronicSituation also writes a blog that can be viewed here.
Phoenix Rising is a registered 501 (c)(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.
There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.
And don't forget: you can always support our efforts at no cost to yourself as you shop online through the Phoenix Rising Store! To find out about more ways you can support Phoenix Rising, please visit our Donate page by clicking the button below.
View the Post on the Blog
TheChronicSituation writes about how choosing to live hidden behind even a partial mask can seem easier, especially when it saves on bothersome explanations. But, at the end of the day, pretense can come at a cost - nobody really knowing who you are...
To what extent do you need to hide your illness, how you are feeling, or the person that you have become? Is it always necessary to tell someone about CFS/ME in every situation?
The majority of people I know, don't know that I have CFS/ME. In a way, I feel that I am lucky that I can pass for a healthy person. I am not so affected that I am prevented from being out in the world, at least part-time.
I live here in the west of Ireland, work about half a week, have an occasional social life, travel at times, have some level of functionality.
And it is not as if I have been deliberately hiding anything. It's just that with people that I don't know really well, it just hasn't come up.
I meet them socially, or in a work setting, and, because I have been managing this condition for so long, I have usually rested enough to be able to function more or less normally, at least for an hour or two.
Though it is true that I am not overly revealing about my state of health, it sometimes seems like too much work: telling people about CFS/ME, having to explain the ins and outs of the condition, how it effects me, the causes and treatments, and all of the politics of it. Even contemplating an explanation is exhausting.
And, it is so easy for them to misunderstand when there is so much misinformation out there. They might have half-heard about one misguided report, in a prominent national newspaper for example, which has happened often enough, and be led to believe that I am some kind of crackpot.
There is also the fact that if people don't know that I have this condition, then for the time that I am with them, I can pretend. It gives me a space where I can be, at least temporarily, how I would be if I were well.
So I think that that is the key. It's almost as if, if people don't know about my condition, then I can, for a short time, be as they see me, a reasonably active, healthy person.
Yet the truth is that I am playing a role. There is this whole other truth about my life that casual friends and acquaintances don't know anything about. They don't see my periods of exhaustion, or don't realise that if I meet them in a pub then I have rested a lot of that day to be able to make it there.
They don't see me struggling with food and with intolerance, and they don't see all of the medications and supplements I take each day.
They don't see my dizziness when I stand up, the exhaustion when I sit down, they don't experience the enormous strain that having to stand for any length of time, causes me.
They have no idea about the controlling force in my life, the obstacle around which I have to organise every other thing I want to do.
I am a half-ill, half-well person, and most of the people I know only see the healthy side. And that in itself is a difficulty, as it limits how close I can be to people if they only know half of me.
But I don't see a good way around this. If I do manage to summon the energy to go out at night, or to any kind of social event, the last thing that I want to be talking about is CFS/ME. And so, in my day to day life, the opportunity simply does not arise to talk about what is in essence the most vital part of my story.
It's probably best to illustrate this with an example: I was in a pub, drinking my usual bottle of still water, and chatting to this girl I know casually. She mentioned that she had done the Camino de Santiago, which is an ancient route where people walk twenty kilometres a day, on a journey through northern Spain; and she suggested that I do it.
The whole thing is six hundred kilometres, and takes about a month on foot. I simply smiled and told her that it sounded like a good idea, that I must keep it in mind. I couldn't even begin to explain to her how utterly impossible even the idea of this would be for me.
The full explanation of why this would be out of the question would have gotten me into all kinds of areas that I didn't feel like getting into at that moment, and would have been inappropriate in the setting that we were in. And it is also true that many people feel uncomfortable discussing or hearing about illness.
Sometimes simply explaining the condition takes more energy than I have available. I find it is often easier just to pretend to be what I seem to be: a normal, healthy-looking - though unknowable - person.
So I go on like this, living an almost secret life. I imagine that to a lot of the people I know, I must appear quite opaque, someone who is all surface and no depth. I think many people wouldn't really be able to grasp the idea of me as someone dealing with a chronic illness when they see me as someone who teaches, who has a social life, who in fact arranges events for a voluntary organisation I am involved with.
I can do all this precisely because I have adapted to my lack of energy. But the truth behind it is hidden, and by necessity will remain so.
CFS/ME is just not something that I feel I can explain in a few sentences to someone I don't know well. The impact is too enormous. So this is the way I am now, living my private, reduced-life at home where I rest, and pretending to be someone that I am not when out in the world.
At times it appears surreal, and makes me feel a bit detached from those around me. But I can't see another way of approaching my everyday life.
TheChronicSituation also writes a blog that can be viewed here.
Phoenix Rising is a registered 501 (c)(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.
There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.
And don't forget: you can always support our efforts at no cost to yourself as you shop online through the Phoenix Rising Store! To find out about more ways you can support Phoenix Rising, please visit our Donate page by clicking the button below.
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