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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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Anyone relate? Venting alert!

Discussion in 'General ME/CFS Discussion' started by Beyond, Aug 28, 2013.

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Regarding my "chronic" health problems family, friends and work people have been...

  1. Somewhat understanding.

    6 vote(s)
    33.3%
  2. Not very understanding.

    3 vote(s)
    16.7%
  3. It is better to not even mention my health problems. It almost feels like talking about UFO´s.

    9 vote(s)
    50.0%
  1. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    My sister says that I have to recognize I am a coward and that my problems would eventually dissapear if I get out and start doing things. She says I have "fear of adult life". She suggests start by going to a farm in the Canary Isles. I only like that idea because I would be doing kefir with raw milk!

    Other than that, she is actually a good sister who tries to support me as she can and a beautiful person, it is just that she is a nurse and doesnt believe in alternative health, so for her it is just psychological.

    My father have said that I am "pusillanimous", that I "lack balls" and that "you have a weak will". When I tell him that I sleep horribly he tells me that happens to everyone. I tell him I dont see everyone dragging their feet with a haggard face and not being able to live their lifes.

    On the other hand he is the "good cop" of the dad/mum duo. He is the one that buys me countless of supplements and therapies and is somewhat open to scientific explanations of adrenal fatigue and stuff but some days before I discover he is back to the programmed trance of the System and acts like only the official story (allopathy) is the legit one and my problems are not real. He watchs television a lot so is no surprise.

    My mother is the best. She is the one that started the trend of seeing me as a coward, and will maintain that in my face. She is a big fan of psychobabble and wants me "not to focus in my illness and be positive" She is the one that made me lose precious years going to professional psycho-babblists and is convinced that everything is mental and you can create your reality with thoughts. She will go hysteric when I tell her my problems, because I react to her denial of their seriousness repeating how I feel over and over again.

    All of them act like the numeorous tests I have run trough conventional doctors, endocrinologists, naturopaths and private labs that show plenty of problems and defficiencies are not a proof of anything, because the doctors available in this city will only run some basic panels that show nothing or very little problems (like high prolactin and very low free testosterone), problems that they dont understand anyway and let alone treat. Basically if they recognized urine and saliva tests as better tools for cortisol and thyroid there would be hope with them but they dont. I even recall one "famous" endo of my town that told me he "didnt know what DHEA was for" (I had it low in serum of course). He only knew that "some old men take it to reverse olding, but there was no science behind that belief".

    I stopped seeing my friends a long time ago but I know they would probably not understand it, although they arent the type of attacking you either.

    I recall one scene, when I was trying to study journalism that I looked for the dean to talk about my problems and why I couldnt assist as much as it was needed to pass. I remember explaining him how it felt like I had some sticky substance around my brain (brainfog) or a stone inside my forehead (headaches) and he said something very offensive, I cant remember exactly but it was something in the line of you are weak and a coward as always. I only remember I got quite angry with that feminine idiot that had a scarf, long hair,a corduroy jacket and colourful glasses emulating the aesthetic idea of a modern universitary dean or something.

    My little brother Manuel of 14 years old is the only one that makes me feel good in a way... Because everyone says he admires me, and they always said it like "God knows why but he admires you". And he always want to show me new things and ask for opinions... Maybe the only one that doesnt think I am a lazy fuck paralyzed by fear, but he is growing up now and I dont know...

    In university there also was a guy that admired me, because of my language and attitude. People also told me about how he commented my ideas and talk like quoting an author (yes they also added that they didnt know why he admired me so much). God, it felt good. All your life with low self-esteem, atractting people that reinforce that shit (like a girl that told me I was garbage and went with another guy while telling me "she needed some time" haha yes some time, and she came back again because the guy was a jerk, to briefly after leave me and in two weeks be with another guy) and when someone sees your value it just feels so good and healthy.

    How have been your near people? Judgemental or not?
    svetoslav80 and Jarod like this.
  2. GracieJ

    GracieJ Senior Member

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    Utah
    Totally relate! Good vent, hope it helped to get it out. Will be back later... and will add some links from PR on this topic.

    Have a good day, Beyond !

    Okay, Friday night here and I am back. Work and sleep wipes out my days. Hey, I feel good that I remembered to come back and post some more!

    I want to add links to two discussions here on PR. They are not the happiest ones, but you might find them of some use. May you never, ever, have to go these routes. You seem like a very strong person, Beyond . I see that reading your other posts. Best of luck and God bless.

    http://forums.phoenixrising.me/index.php?threads/cutting-ties-with-family.13718/

    http://forums.phoenixrising.me/inde...st-people-in-your-life-since-being-ill.15971/
    Beyond likes this.
  3. SOC

    SOC Moderator and Senior Member

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    USA
    I told my family of origin (my immediate family understands ME/CFS very well), that unless they've done some research, such as reading the CCC and ICC criteria, and papers about immune abnormalities and other biomedical abnormalities in ME/CFS, they have NO idea what they are talking about and are just being cruel. Would they say the same thing to a cancer or MS patient? (Actually, my family of origin would, but that's another story.) If they want to complain or accuse me of horrible behaviors, they had better understand what I'm facing first.

    I don't think they did very much research at all, but they've stopped giving me crap. They have developed some consideration in minor things, like accepting without complaint that I use a wheelchair at the airport. They may complain about me behind my back, but I don't worry about that. ;)
  4. PennyIA

    PennyIA Senior Member

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    Iowa
    I have used that line with my son who is an adult and does seriously try to be supportive, but occasionally tries to give 'helpful advice' like - sometimes doing exercise generates more energy (i.e., endorphins).... which usually gets followed by the explanation that the fact that my endorphins DON'T react and in fact I get more ill after exertion is a clear sign that something IS REALLY WRONG.... but when that doesn't seem to help... my go-to line has been.

    "You wouldn't say that to me if I had a diagnosis of cancer. Being undiagnosed does not mean I'm not ill."
    Valentijn and ggingues like this.
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    I'm confused. Your dad is the "good cop" and your mom is the best? Is that sarcasm in regards to your mother? Seems so to me.

    GG
  6. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    I wish I could change my vote, I filled mine out to be somewhat understanding just based on the one sister being understanding (the one who's developed CFS herself) and ignoring how the rest of my family is (I was being too positive when I voted, I often try to ignore the negative stuff).

    My other sister told me "You should be put in a home" (said in a nasty way when I was telling her about the issues I was having). My third sis.. she acts sympathetic and very occassionally does help me with things but im sure if she truely understood how sick I was that she'd been checking up on me more, offering to help etc (she lives only 5 mins away but only drops in for about half an hour every 6? weeks).
  7. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Murcia, Spain
    It is sarcasm. Maybe I dont dominate it well because I am partially autistic hah hah
  8. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Wow that is tough SOC, I am glad they are "somewhat understanding" in your case. :)
  9. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    That is typical tania. At the end only these that had this or something very similar can show some authetic empathy. I mean, if I was healthy I think I would be the first in falling in the useless psycho-babble musings and judging people.
  10. kisekishiawase

    kisekishiawase sad

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    southeast asia
    i seriously lol at the
    "better not mention its like talking to an UFO"
    except i feel the one that was the UFO, different
    lol the haggard face. my mom always tell me i always look so sad and gloomy. so different than when i was a little child. well duh.. its all thanks to this life that has been so 'nice' to me.

    some people often said "look that person (on news or i know) got *insert disease such as cancer or disabled condition* but can be more positive and productive than you" and many similiar saying.
    i can relate to what you been through a lot. i live in a country where the medical isnt very advanced thats a disvantage and makes it harder for me.
    most of the time no matter what you did to explain to them doesnt seem to help. and i understand that you cant expect people to understand what they dont know cause theyve never been through near it. cause theyre healthy. its like expecting a blind person to see.
    but the problem is when the situation needs you to make some people to understand and you cant.
  11. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Yep, they compare me with people as well, with my aunt who has rheumathoid arthritis ( a bad case) and she still has a family and goes to work (not lately she is rapidly worsening). I think people dont understand that when you dont restore energy while sleeping and your hormones are pitifully low, your intestine is chronically inflammed because of food intolerances etc etc there is no possibility of being productive. The only forces I have they are used in searching for a cure and I tell them that all the time.

    If you need help with convincing the people you need, I can help. I have given my parents loads of ncbi´s and international studies that somewhat convinced them that I have "something" even though normal docs in this town say otherwise.

    Are you in Japan? If you are, I thought it was a scientifically advanced country.
  12. kisekishiawase

    kisekishiawase sad

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    southeast asia
    no im not in japan unfortunately.
    yeah they always said stuff like "if you cant sleep dont sleep untill you get sleepy."
    theyre not the ones suffering with the torture of sickness and dark circle, etc.
    well they do know that im sick but they cant understand and still making ignorance or mean comments no matter what in the end. and cause they keep sticking to "mind power of positivity".
    but whats more important and harder was getting the doctors that i need to help to pay attention more and believe. some doctors only care about making money.
  13. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Murcia, Spain
    You will first need them to make you tests, without tests studies arent of much use. Sex hormones, Adrenal and Thyroid are good beginnings because they are always screwed and that is a good start for people to see you have some problem. For example, I have high estradiol, high prolactin and low free testosterone. Remember, 24 h saliva for cortisol, urine 24h for thyroid (good luck trying to make a doc do these to you), DHEA, pregnenolone, progesterone, ACTH in blood. With these you will have a good start. Blood cortisol and blood thyroid are pretty much useless (will come back "normal") unless you are in a very very severe state (addisons etc), but they are worth doing. Also, ask for testing of Thyroid antibodies, very important.
  14. Jarod

    Jarod Senior Member

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    planet earth
    Hey beyond I hope things get better for ya! Sounds like you have god parents, but they probably read too much and watch to much TV.

    Shoot we all have been duped by the propaganda on TV at one time or another. Impossible to re-educate people at times especially when they have watch alot of TV or just skim the news headlines.

    Just want to mention the bright side. Most suckers out there can't get a diagnosis and get caught in the mainstream medical unmerry-go-round.

    Just look at some of the comments in this article about depression on yahoo. gee-wiz what a mess!






    one of the more clever posters here..

    http://shine.yahoo.com/healthy-living/the-surprising-truth-about-men-and-depression--165535021.html
    Beyond likes this.
  15. Jarod

    Jarod Senior Member

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    planet earth
    I wasn't trying to get off topic. Just would like to see some honesty for a change. Not going to happen until hollywood and free speech for the media is banned. Frustrating
  16. kisekishiawase

    kisekishiawase sad

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    southeast asia
    Beyond yes i know thats what im trying to do and hoping that it will pick up somethings, detect the root of my problems well at least shed some light. but you see.. even for getting test for food intolerance i have to fight with the doctor and i still havent got it so im still trying to find another doctor who wants to help. but it costs a fortune hopping from 1 doctor to another doctor pay them and get nothing in return. such a waste. and also all the tests cost a lot too.
    for cortisol and saliva was quite confusing too which ones more accurate. ive been reading about it online and got varried result. also most or all doctors here dont believe in saliva tests.
    anyway thanks for the inputs i really appreciate it :hug:
  17. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    I know Jarod. Depression diagnosis... these are my thoughts on it and the rest of the whole psychobabbling trend...

    [​IMG]
    Jarod likes this.
  18. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Forget about my liitle brother. He is becoming an idiot, which was expected from someone that spends hours watching Youtube vbloggers. If this illness or my life has taught me something, is that most of people are better out of your life than inside it, especially when you dont have forces to put up with morons, ignorants and evil ones. Sometimes I wonder what is going on, why I dont feel bad for withdrawing from people that were supposedly near to me. Partially I know it is because I am resting from the stress that they caused but it is sad anyway.

    At the end it is because I didnt feel a profound connection with them, that is the truth. I have never met in real life someone that shares my deep worries and questions about life and reality, neither my passion for certain things like literature. Loneliness, yeah that has been my life and people wont understand that nowadays that I am mostly homebound I am NOT lonelier that when I was healthy and interacting with society.

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