Families of ME/CFS'ers Cruel? BIG VENT

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Aug 19, 2009.

  1. Elisa

    Elisa Member

    I have to believe that there is an epidemic of cruelty to people with ME/CFS.

    I know because my own family harasses me daily about:

    * not getting better

    * not finding the "right" doctor

    * not trying hard enough

    * giving up

    * not following through (with docs that write me off)

    * not improving

    * not finding an answer

    * not being smart enough

    * not figuring it out

    * not finding a way

    * not getting it done

    * not succeeding

    * not being aggressive enough with my doctors

    * not demanding an answer (this is almost funny, if I wasn't in tears)

    AND ON IT GOES, its awful

    I can't get my family to read anything on any part of this illness. They insist that I must continue to go to doctors - or they say "well the doctors can't find anything wrong" - which isn't true because even when they do, they STILL don't help.

    I have had perfect blood work and blood work with a myriad of problems - from reactivated EBV, high ANA, thyroid abnormalities (TSH specifically), a fever for 2.5 yrs, low white and high white counts and everything in between, major heart and bp issues (had tilt etc.).

    Anyway, my family is merciless and in many ways its the worse part about being ill - the pushing pushing pushing - as if they are saying in unison "GET BETTER NOW" and I haven't a clue after 14 years of illness on how to do this.
    It is outrageous that people believe there is a cure for everything. I haven't gotten a bit of help and I have tried harder than I can express - after all I have the most to lose - not getting better - resulting in a sad, restricted, frustrating, unfulfilling LIFE.

    I think I live in a near constant state of shock - shock that I am sick, so very sick and cannot get better and EVEN greater shock that those that are my family believe somehow that the fault is MINE.

    Whewwww - so glad to finally get this out.

    God Bless,

    Elisabeth[This Message was Edited on 08/19/2009]
  2. debshomeed

    debshomeed New Member

    Families should be our main supporters and encouragers. They should just be able to accept us knowing that we are doing everything we can possibly do given our disease but I guess they just don't understand.

    My parents can be very similar (though not to the extent you describe it). They want me to be better so that they can stop worrying about me.

    In fact last time I visited them they insisted I see their doctor just in case he could find anything and help me. I absolutely dreaded this visit because I had had enough of the medical profession not being able to find anything or able to help. I did as they asked anyway just so that it would ease their minds that I was doing everything possible.

    I don't enjoy talking about my health with my parents as I can't seem to win- if I'm sick they want me go to the doctor's, if I'm well I feel pressured to stay well so they won't hassle me. I am thankful I feel that I am getting better so I can continue to say I am good and quickly change the subject.

    I have had friends pressurize my husband "to do something" about me when I had a severe relapse because I looked obviously unwell. This caused a lot of anguish and friction in my marriage as my husband felt reponsible for getting me better even though we were doing all we could.

    I find people's responses of this nature their problem- it is a way for them to feel better and avoid feeling worried/burdened/uncomfortable.

    I am thankful I can run to God in moments like this.

    Hang in there,

  3. jasminetee

    jasminetee Member

    That's an awesome post! You really captured just what so many of us are going through. In many cases these things aren't said outright but it's made known to us in subtle ways. Suddenly it seems as if you can read everyone's mind because they really are all thinking those things.

    When you mentioned feeling like you are in shock, I realized I am too. I've been in shock for a long time and for the same reasons you wrote.

    I just love your List of Nots. I wish we could put your post up as a permanent stickie. That is THE list of Nots for all of us.

    It feels good to get it out, doesn't it? It sure helps me to read stuff like this.

    We can get through this and be as happy as possible. People who do that to us can go fly a kite. :)

    [This Message was Edited on 08/20/2009]
  4. greatgran

    greatgran Member

    What else can I say, you said it all..Not only to our family, use to be friends, but I find the same with most doctors..In fact if I had never had this illness I in no way could even imagine how devastating it can be..so don't expect anyone else to get it except doctors and most haven't a clue.

    God Bless,
  5. TeaBisqit

    TeaBisqit Member

    I kept trying to tell my idiot relatives that real life is not like a soap opera. Everything on a soap is fake. People get major illness on soaps and are fully cured in three days. Real life doesn't work that way. Sometimes things are not curable. And sometimes things are not even fully treatable. That's the reality of life.

    My relatives want to live in this fantasy world where no one gets sick. If someone dares to get sick around them, they shun that person and do not speak of it. To me, that's not normal. In real life, people really do get all kinds of things.

    I just don't have anything to do with the relatives now. If they refuse to learn about the disease and they refuse to support or help me. They don't belong in my life. We don't need people bringing us down on top of being sick. It's just too bad we can't make them try out the disease for awhile and see how much fun it is.
  6. AuntTammie

    AuntTammie New Member

    It's crazy that people can expect us to do so much when we are sick, but they who are healthy can't even take the time to read a little to try to understand. They seem to be the ones who turn into complete wimps when they are even a little sick or hurt, too. I'm normally a very compassionate person, but sometimes I so want to give people like this a month or so of experiencing our lives.
  7. msbsgblue

    msbsgblue Member

    Just recently my daughter now almost 43 said to me, "I am tired of talking to you and you ramming down my throat that you are ill."

    I actually only reply when ask how I am, and she thinks there is nothing wrong with me, need to get out at my age 62 with FM/CFS and severe arthritis and get a job, get a life and find some friends. Well, I would if I could. I get so angry.
  8. Foliage

    Foliage New Member

    Thank you for your candid expression of frustration and loneliness. I have Fibro, and CFS together with many other illnesses. Unless you're feeling it yourself, I think it's hard for people to understand or comprehend your pain and depression. I'm so sorry your family is hard on you. That definitely is a health set back that you'll need to conquer. If they make you feel bad or quilty...don't be around them. I know that's easier said than done. I'm going through a similar problem. I think maybe we all are. Maybe we need to strive to be around those who support us! Be with those who can connect with what you're going through, with all this pain, etc. By doing so, maybe you'll establish a new type of "family."

    Take care...we're here for you!!


  9. skeptik2

    skeptik2 Member

    I have never met a more courageous group of people than those with these DDs!~

    Through all the trials of trying to find a way to feel better, stronger, healthier, you all show the most humbling courage. I love you all so much.

    No one can understand this illness, or 'these', FM and CFS unless they, too, get sick with one or both of them. After 21 years of both, I understand that now. I don't ask them to 'get it' anymore. I just live my life the way I want to and if they don't like it, they can walk away. I have to be me: sick, in pain most of the time, but determined to live somewhat of a life when I'm able.

    I can't bring myself to actually 'wish' it on anyone; karma is painful also :) Hear me, rafika? (I love her attitude!)

    You see, we are blaming the wrong people (family, friends, etc.,). The real harm has been done by the CDC, who has psychologized this illness since they first heard of it in 1986, after the Lake Tahoe outbreak. Please read Hillary Johnson's new blog about the things that were said and the Invest in ME (IiME) 2009 conference. It's at her website today... oslersweb dot com.

    Read the GOOD PART: the WPI in Reno NV, has a brilliant scientist, Judy Mikovits, who has taken our cause to heart...she leaves her 2 email addys and her own cell phone number on Hillary's site today. She is living for us patients now, and she has enlisted the Cleveland Clinic and others in a fast-paced research project to help us all.

    Have hope, keep your courage, just be yourself and let everyone else's opinions be 'their problem'.


    But it is on the way!!!


  10. shari1677

    shari1677 New Member

    Elisa - my family is the same way. I keep hearing "well, you have to do something". Even when I tell them it is chronic, they just shake their heads or worse yet, roll their eyes.

    Right now I am living with my sister, but she has given me until spring to move out. I'm one of those people who makes too much for welfare, yet, welfare in my state does not take into consideration the amount I spend each year on medical benefits, prescriptions and doctor visits. So even though I may make enough in the eyes of welfare, once you minus everything, I'm extremely low.

    I'm very angry with my family now because nobody will take me in. If they were in my shoes, I would take them in and they know it.
  11. jasminetee

    jasminetee Member

    That's absolutely horrible Shari, I'm so sorry. You deserve compassionate people in your life.