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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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A Hidden Life

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 9, 2014.

  1. Phoenix Rising Team

    Phoenix Rising Team

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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...

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    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.

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  2. Mij

    Mij Senior Member

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    Thanks for writing this, it totally resonates with me. I've also learned along the way that it's not necessary to try and explain ME, I've told people that I have a "medical condition" that limits my energy and that I need adequate rest in order to recover. Most people understand and respect my privacy and don't push any further, these people I can let into my life a little more.

    If they show an interest I can explain further no matter how bizarre this illness may seem to them at first. I tell them it's neurological.
     
  3. taniaaust1

    taniaaust1 Senior Member

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    Those who can hide this illness are lucky... many of us cant and hence we end up constantly having to respond to things people may say or ask or the wrong conclusions they jump to about it and what they see no matter how much we dont want to be doing that at the time.

    Unfortunately this makes life far more complex and many dealings with people I have arent great (some people will ask you something about it but then not like the answer you give).

    Last week, I even had a gardener I rang to try to get a quote start up.. The thing which set his questions off was me just simply saying he couldnt come around too early to look at the garden.. his response "why?" .. my response "Im not well so need extra sleep and get up a bit later" .. his response "what is wrong with you?" (said in a not nice way). I then tried to change the convo but he just kept up with stupid questions. (needless to say Im avoiding now getting that gardener in, Im going to have to keep looking, the other two I rang didnt ring me back).

    The sicker one is thou, the harder it becomes to field off questions on the spot and the more questions people ask.
     
    Last edited: Jan 9, 2014
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  4. PNR2008

    PNR2008 Senior Member

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    In the beginning I thought I was on a mission from God to explain this illness. It was my way of dealing with it myself and being an advocate. Soon my energy was depleted and many misinformed hurtful comments made me sicker. I got pretty good at managing my old house and my illness but some neighbors became hostile that I didn't work, they hated my well behaved dog and my "vacation type life style"

    In warm weather I'd lie on my wicker porch swing with feet up in the air (to help the POTS and pain). I'd get comments like "it must be nice" and "I know real disabled people" and "how can you walk your dog". I was verbally attacked so much that police were called and threats of harassment lawsuits finally stopped the onslaught at least to my face.

    I moved to a 55 and over community where I was at first thought too young but here people get sick and die quickly. Everybody is doctoring over something. The many healthy ones wondered why I didn't partake in activities here but soon they became used to it. It's much better here for me but these places are expensive for an easier life and the older I get the less money is available.

    One of these days an EMS will take me away and people might say "I guess she was sick, what was it called that she had?"
     
  5. vamah

    vamah Senior Member

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    The thing with me, is that I have always been very shy and slow to open up to people. As a result, I have always felt that few people see the "real" me. So hiding my illness is a natural response for me. In fact, I'm always surprised when people I hardly know tell me about medical problems or other personal issues in great detail. If I hear a statement about ilness similar to my own that is flatly untrue I try to correct the speaker's misconceptions. But only in an academic way. I don't talk about my personal experience to anyone but my husband, my adult children, and my closest friend.
     
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  6. Firestormm

    Firestormm Guest

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    I think in the early years I was desperate to explain, but there was really no explanation that actually made any sense and I was dogged with the stigma of course - but looking back I think that stigma of 'yuppie flu' may well have been of my own making. I didn't want ME as a diagnosis and would have given anything to have another one in its place.

    So it caused me greater stress trying to explain. Though to be honest I was in such a bad way that when I was still trying to work, people knew something serious was wrong and a few collapses and trouble speaking and thinking straight, let alone walking in a straight line, my employers were quite considerate. Of course it was colleagues generally, and my own internal thoughts as to what they must be thinking, that was hard.

    In those days whilst ME was known it wasn't known as well as it is today I don't believe. Not that I am saying today's knowledge is necessarily any better, but I think awareness generally is. But as I think I grew mentally stronger, I came not to be as concerned with what people might think of ME and how it affected me - or how invisible it was - so I suppose my mask has become one of indifference.

    That said, I proudly sport my badge for the ME Association on my coat, and have had one in place ever since I was diagnosed 14 or 15 years ago. If anyone asks me about the initials, I do tell them about the condition, and as to what they might think of it or of me - I really couldn't give a fig :)
     
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  7. Soporificat

    Soporificat

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    Wonderful post. So accurate, at least for me.

    This stupid disease.
     
  8. apogan

    apogan

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    I guess our unique perspective makes it easier for us to understand that they are people who we meet who are also hiding something. An illness, anxiety, grief, abuse. In a way we are all the walking wounded. In our pain, we can offer understanding and compassion. In small talk situations, like the pub, it's difficult to make that connection though. not worth the energy I think.

    In my idyllic suburban neighborhood, I finally had to come out with my illness and the gravity of it to let the other moms on the block understand why I could no longer participant in all the parties, volunteering, etc. They still don't 'get' it, but they offer help, and seem understanding. I hid it for a long time out of pride or shame. I would not recommend that. Tell your neighbors, ask for help if you can.
     
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  9. SOC

    SOC Senior Member

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    I don't use the "CFS" label simply because it immediately brings enormous amounts of misinformation into the conversation before I've said more than 5 words. That's not communication, that's miscommunication.

    I tell people I have a neuro-immune illness with immune dysfunction that leaves me with multiple chronic and recurring infections. All true. Most people I know have been told that I usually spend most of the afternoon resting and not to call me then or expect me to participate in anything at that time of day.

    I don't pretend I'm not ill. I use a wheelchair when I would have to walk more than about 100 yds. I don't participate in many social activities, and when I do, my time at them is limited. People who are around me a mealtimes see the huge amount of medications I take to stay somewhat functional. I don't hide it. I'm not ashamed of it. This illness happened to me. I didn't deserve it. I didn't cause it. I have nothing to be ashamed of. I shouldn't have to hide.

    My daughter's department/college knows she as been very ill and is currently in remission. They also know she has worked very hard to stay in college and get good grades. They even nominated her for a scholarship for students who maintained good grades while facing huge obstacles. They admitted her to graduate school. Her friends have seen her ill, exhausted, and barely functioning. They don't really understand, but they don't consider her lazy or crazy. She has given them advocacy/awareness information. Hopefully they will go on to spread knowledge instead of misinformation.

    That works for her largely because she was not severely ill. She was clearly ill to those who cared and paid attention, but she has been able to function to a large extent. She has been a good advocate for us because she has NOT pretended she's not ill.

    That said, it's not all roses. She lost a summer internship she was hired for because she admitted on paperwork that she has ME/CFS. They claimed, incorrectly, that she would not be up to the work. She probably could have fought that and won, but in the end she was happy to spend the summer with her fiance rather than working 1000 miles away. ;)

    She knows now not to tell prospective employers about her illness unless the illness would clearly make her unfit for the work -- in which case she wouldn't be applying for that job anyway. :rolleyes:

    She is currently in remission and we work hard to keep her there. She won't be telling her future employers or coworkers about her illness in any great hurry. Hopefully it will be a non-issue. At the same time, if she ever crashes and needs medical accommodation, I don't expect her to hide her illness anymore than I would expect someone with cancer, or MS, or any other serious illness to do so.

    We hide because we don't want to deal with the misinformation campaign that's been spread about us. It's exhausting to try to correct all that misinformation. It's embarrassing to be treated like a malingerer or a hypochondriac. But that's not US, that the misinformation. We shouldn't play into that misinformation by acting like we are ashamed of having contracted this damned illness. It's not our fault. We're not guilty of anything. We're sick with a horrible illness.

    I deal with that misinformation among the public by not using the labels associated with that misinformation until people really understand how ill I am. I tell them (briefly) about the symptoms (immune dysfunction, infections, thyroid dysfunction, autonomic dysfunction) and that not much is known yet about the illness. I tell them we are desperately waiting on more research and that the research is grossly underfunded because of a lack of awareness. If someone actually cares enough to want to learn more or contribute to research, I link them to Simarron or OMI or some reputable organization with intelligent information about the illness. What I don't do is give them the "CFS" label so that they can go onto the internet and read about CFS on Wikipedia or at the CDC, both of which are rife with misinformation -- or information that does not apply to my illness, anyway. I suppose that's my way of "hiding". ;)
     
  10. svetoslav80

    svetoslav80 Senior Member

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    Great article, my exact thoughts which I can't express this way because I'm not as good in writing.
     
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  11. TheChronicSituation

    TheChronicSituation

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    I agree that I am lucky enough to be able to hide the illness. I can impersonate a healthy person for at least an hour or two at a time. I have been more ill, though, and during that time I just tended to avoid contact with people for the most part, explaining things about this condition was just to exhausting.
     
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  12. TheChronicSituation

    TheChronicSituation

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    One of the reasons that I don't talk much about the condition is that, when I hear other people going into great detail about their own ailments, I find it self indulgent and at times tedious. It is all too easy to become a bore about illness if you have a chronic condition like ME.
     
  13. TheChronicSituation

    TheChronicSituation

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    Yes, I have come closer to this attitude recently too, if I talk about ME it is important that I am accurate and exact, but if people choose to misinterpret the explanation, or misunderstand something, there is really nothing I can do but get on with my life. We have enough to be doing just to survive, without also having to be representatives of our condition, which is itself energy draining.
     
  14. TheChronicSituation

    TheChronicSituation

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    Thanks for your comment, I think there are lots of us in a more or less similar situation.
     
  15. TheChronicSituation

    TheChronicSituation

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    I think that is a very good point, in truth most people, healthy or ill, keep vital parts of themselves back from everyone but their closest friends and family. It is nothing exceptional to be hiding something.

    There often does come a point though, when talking to people about what is really going on is helpful, and even necessary. I have had to do that more than once while going through crises when I needed some help. I have never hid my illness out of pride or shame though, it is probably more for me about a fear of being misunderstood.
     
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  16. TheChronicSituation

    TheChronicSituation

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    Thanks for your comment, glad you can identify with it.
     
  17. Samuela

    Samuela

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    Reading the article and the comments brought me to tears. I realized how much of this I experience in my own life, and how much my thinking was still formed by the things people used to tell me right in the face or whispered behind my back: That I am being to sensitive or lazy, that I like to have others doing things for me, that I have this "mental condition", that I somehow want to be sick and therefore I'm not recovering properly. I realized, that my thinking of myself as "not really CFS" is not true. I know exactly this all-dominant managing of energy, that keeps me able to work 2-3 hours most of the days, the resting before meeting friends and afterwards. Being able to do some careful sports, but only if I get there by car with as less effort as possible. How explain to the neighbours, that I rather meet friends and do some very cautious workout, than shipping snow? How to explain, why I have to make a decision where to put my energy?

    I feel like no one really gets it. I remember sitting in a full bus when I felt pretty dizzy. A woman with her old mother squeezed themselves trough the standing people and demanded my seat, looking at me like a was a very impertinent subject, leaving this poor old grandma to stand. I was too exhausted to explain my situation, stood up and fighted fainting until we arrived, leaning to the glass door with my forehead. A part of me wished me to faint, so the woman would feel sorry and never again misinterpret someones health status by their age. After all, I'm shure I looked very pale, ready to faint or vomit, and a more sensitive person should have seen it.

    But also with trusted friends the situation can become awkward. Last week I had to cancel my going to an evenging with friends, because this day I felt deadly exhausted. My friends were really lovely and said next time they would come to me and even bring the food (they had prepared not-gluten, non-fructose, non-histamine food especially for me so I would be able to eat with them <3 ). I felt so... I don't know... I mean, explaining them, that even with those kindest efforts of them I wouldn't be able to have people around me, while I'm obviously able to chat and connect via facebook. How can I explain the difference it makes for my energy level, between being all alone but connected trough the internet (thank god for that, without it I would be apart from all of the world!) and having real people with all their emotions, needs and thoughts directly around me?

    Well, you see I'm not hiding, I also tell my clients and they are very kind and understanding. But nevertheless it keeps being a challenge explaining the unexplainable. :(

    Another point of view: People tend to think I have everything one could wish for. I also tend to think that and sometimes bash myself, because I often don't feel lucky. I have a wonderful partner who cares for me with all his heart, a wonderful cat who brightens my dark hours, wonderful friends who actually take the challenge to cook for me, we live in a nice flat, I have a lovely little car that spares me a lot of effort, I have a wonderful job where I give back to wonderful people. We have enough money to get me the treatments I need. And I heardly dare to say it, but I had a photoshooting with my band today, we have a record contract and people can buy or first album on amazon (no advertising here, I won't tell the name!). I could live the dream I didn't even dare to dream of, when I was a teenager. I could.

    It seems like I'm living the dream, but I don't. I'm fighting. Always. Every minute of every day and every night and from time to time... I get so tired of it. For every gain there comes the pain, one could say.

    I should feel so lucky, but I don't. I want life, I want to live it, every second of it. I won't stop fighting, and when I'm better, I will help others to gain that, too! That's my promise!

    Long post. Guess it all just needed to be said, finally. Thanks for listening and above all to TheChronicSituation whose article led me to put my inside into words. Thank you all so much for being here and sharing! It means the world to me to know I'm not alone!
     
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  18. alex3619

    alex3619 Senior Member

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    I wrote something similar in Masks: http://forums.phoenixrising.me/index.php?entries/masks.680/
     
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  19. Hermes

    Hermes

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    I also live in Ireland and can identify with the writers sentiments. Irish society is not open minded, and ME is an illness which is stigmatised and misunderstood by most people. People here tend to attack or dismiss or ridicule things they cannot understand. There is an appaling education system in Ireland, most people don't learn science and basic manners and civility in schools and homes. They are incapable of understanding the ME illness or emphatising with it. Thus ME patients are encouraged to keep quiet and cover up their illness. As regards truth and being true to oneself, how can one express truth in an environment where truth is rejected in favour of stigma, prejudice, superstitions, egotism and tv sports and talent shows.

    We have tried to inform the Irish public via our ME clinic web site at www.me-ireland.com and get proper medical facilities for ME patients here.
     
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  20. Hope123

    Hope123 Senior Member

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    I think everyone has to decide for themselves how open or not they want to be about being sick and that can vary depending on the circumstances as well.

    For casual acquaintances or one-time encounters, I don't feel there is a need for them to know about my illness. But if I have to drop out of an activity or delay something, I will explain to the person why so they understand it's not because of them personally or the event or that I don't want to participate anymore.

    But when I do mention it, it can vary too depending on on how far I want to get. It can be as shallow as "I have a chronic illness" to "I have chronic fatigue syndrome. Have you hear of it before?" followed by details. I ask the question because some people have indeed heard of it. Usually because of Laura Hillenbrand, the writer, here in the US.

    On the whole, I've received neutral or positive responses -- some people have heard of how severely ill Hillenbrand is while others have relatives with chronic illnesses and can sympathize while another group have not heard anything at all. For the latter, I tell them it's like being exhausted with the flu all the time (which is my brand of CFS) -- most people get that as they've been put out by the flu. After that, I tell them I try to live my life as possible but that currently there is no effective treatment. Usually, that's the end of it and we go on to talk about other things.

    I have to say though even pre-CFS, I have a devil-may-care attitude about how people view me. I never and still don't care about being popular. If they're not people who directly affect my life (family, the people who wrote my paycheck, childhood friends, my patients, trusted colleagues), I could care less what they thought. So that helps me deal with any negative perceptions from people.

    Once, an old lady sitting across from me gave me the stink eye and started to lecture me when I remained seated in the handicapped section of a crowded bus. (this was not a polite questioning or statement; that would have promoted a more polite response) I stared right back at her, told her I was chronically ill, and to mind her own business in a loud voice. Everyone else stared back at her -- yeah, I embarrassed her back! And I remained seated for the rest of the ride with no one bothering me. If I'm using a handicapped placard and the rare person stares at me (I'm not elderly), I just ignore them. No one's ever had the guts to confront me.

    Another thing I do is keep rude, shallow, stupid people out of my life unless I have no choice but most times, I do.
     
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