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ME/CFS: In Free Fall Through the Looking Glass
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Dealing with Others

Discussion in 'Lifestyle Management' started by LilacGardenia, Jul 6, 2012.

  1. LilacGardenia

    LilacGardenia

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    So as a teen and college student, many of my friends and classmates are constantly up to something. I'm always getting invites to things and asked what I'm up to. When I return to university, the first thing people will ask is "what did you do over summer break". Many went on (or are currently on) trips around the world, some took on internships, countless hours of work and class, etc. and so far I simply recovered from a major surgery I had (which was a big set back) and worked a light work schedule (no 40+ hours a week like some of my friends) and have been the housekeeper for my family (I'm at home with my parents.)

    I don't get how I can turn invites down (without wearing out the excuse of being busy with other things, not feeling well, etc.) and explain to them that having endless energy and the basic things people take for granted like being able to stand without getting too dizzy, aren't there for everyone. I typically keep this type stuff to myself and feel awkward talking about it (even with really close friends.) How open is everyone else about their "situation?"

    I feel like a lot of people assume I'm this boring, depressed person that is making up excuses to avoid whatever they have planned, when really I'd love to attend. I'd love to be at the pool for several hours a day with them, working long hours and doing exciting internships and all that, but I simply can't. It really stung when I was told by my adviser/instructor that I "need to go on a trip" o_O almost as if my lack of adventurism was by choice rather than the miserable reality that I have little choice over. I was so embarrassed and steamy over that one comment--it still lingers in my mind and BUGS ME. :sluggish:

    I guess I could say that I'm slightly angered by people's assumptions and the difficulty of explaining the truth to them without getting too detailed, as well as the fact that I'm being physically held back from doing things I really want to do. How does everyone else handle issues like this with blissfully unaware friends/colleagues/peers, etc.? Are you upfront with them or leave the reasons behind your "uneventful life" to the imagination? :aghhh:
  2. SickOfSickness

    SickOfSickness Senior Member

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    I understand your frustration. I was so upset too when certain people keep asking what I did or when I was going on a trip. You would think after years of asking they would get it, that I don't go anywhere.

    In your situation, I guess I'd say "It sounds great, but I can't travel" or "I wish I could! I am still recovering from surgery."

    I don't have people in my life, because of this problem and people add stress to my life. Any that I am close to or confide in are people who understand pretty well. I have one who doesn't understand but still tries to be kind to me, so that works okay, if we have less contact with each other.
    LilacGardenia and Merry like this.
  3. Nielk

    Nielk

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    Queens, NY
    Lilagardenia,

    Your situation is more "socially challenging" I think than most of us because of your young age. I was "fortunate" in the fact that I became ill in my late 40's so most people don't expect you to be so active.
    I understand how you feel conflicted about you wanting for people to understand your situation yet don't want to stand out as being "different".
    You will have to I guess find your own happy medium where you probably can share your problem with close friends and others will just have to stay in the dark.
    One thing I found out from experience is that in the whole others really don't worry half as much about what we say or do as we imagine.
    If you just say"my doctor's orders are to take it easy and rest as much as I could" without details, I would think might satisfy most people.
    I understand that you feel left out not attending most social functions but, resting is so important for you. You might choose though to attend some functions that are not so physically challenging. Like attending for example a pool party. You can just work on your tan on a leisure chair and say I don't like the water.
    In any case, I wish you the best of luck and remember that your advantage is that recovery is much more prevalent for young people with this illness.

    Nielk
    LilacGardenia and Merry like this.
  4. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    Not everyone would of done something "exciting" during their summer break, there would of been many others who did mundane things too (you just will hear more from those who did exciting things, so it ends up appearing everyone did). Having major surgery is plenty enough to have done during a break. I dont think you should be feeling awkward for having a mundane break, maybe you yourself are more worried about this then what the others will actually think?

    Maybe you need to try to educate your advisor/instructor more on ME/CFS? (you could find some stuff online which explains the illness well and how incapitating it can be to take to him/her and try to get it throu how lucky you are to be doing the things you are just able to do now. People will assume things when they just dont know. Sometimes they need to be helped to understand. (and then if it still doesnt help.. realise its them who has an issue and not you).

    Im completely open with people as really in my case I dont have much choice as too much of my life is affected, so need to be open.
    You thou sound far less hindered by the illness so quite possibly you could get away with not sharing about it much (only to those you need to do so). Your close friends, you probably should be open with as otherwise they wont understand all the knockbacks and will go and then assume things about you.

    teachers too it may be better for them to probably understand you arent well so having to put a lot more effort into the work etc. (universities also make some special allowances when it comes to students who have health conditions affecting them esp when it comes to things like exams eg extra time given).
    LilacGardenia likes this.

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