Do Not Let "Loved Ones" Run Your Lives-Part II

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Sep 19, 2003.

  1. Mikie

    Mikie Moderator

    The original post has gotten sooooo lengthy that I am starting this for anyone who wants to reply. If y'all want to reply, please use this post instead of the original as it's getting very unwieldy due to the length of the thread.

    By all means, though, read the original if you would like to. Here's a cut 'n paste of my original message.

    In my 2 1/2 years here, I have read soooooo many posts from people whose families do not support them and make them feel guilty for being sick. Why do they do this? Because they can!

    It is up to us to take care of ourselves and take control over our lives. Family and friends will just have to adjust. If they can't, they don't have our best interests at heart. During times of illness, we often find out who our real friends are. Just because people are family does not give them the right to roll their eyes, make nasty remarks, or treat us with disrespect. This behavior is toxic to our healing and we should not put up with it.

    We may have to make some hard decisions about the relationships in our lives, including unsupportive spouses. In the end, we have to have self-respect and stand up for ourselves. We have to teach others how to treat us or we are not in control of anything.

    Love, Mikie
  2. bamboo

    bamboo New Member

    hi. i just read through the other 50 posts prior to this one and i cannot tell you what it means to me to have this issue addressed. i think that this has been the hardest part of the illness for me. i have no siblings, my relatives are deceased. i have only a dear, compassionate husband to support me. i moved to a new state, when i was still single (15 years ago), just prior to becoming ill, and have not had the energy/ability to get out as much as a newcomer would need in order to establish friendships that work for me. most of my old friends fell by the wayside due to my illness (and their high energy, etc.); my inlaws have ignored the fact that i am ill and show no interest nor compassion; and the few acquaintances i have developed have little interest in spending much time with someone who is ill. i am a friendly, extroverted person, with a lot of interests, and a very active past (before illness). i lost the ability to work and am challenged to find meaning in my life on a daily basis. i love this website and don't know what i would do without it. however, i have yet to run across anyone else in a similar position. it would feel healing to find support from anyone who could relate.
    i am always grateful for your wisdom, mikie and shirl, and thank you both, and mikie, for starting this thread, once again.
  3. Donna7

    Donna7 New Member

    Boy did this make me cry. I have been sick for about 3 yrs. with fibro. To this day I don't believe my family understands or they are blocking it from their minds.
  4. HoaxedTotem

    HoaxedTotem New Member

    If u email me at I can send you some real stories that'll make them wake the hell up ! At least a little anyway hopefully .
  5. Donna7

    Donna7 New Member

    Gosh this one really made me cry and I know I am not the only one that people think I am crazy. They let me go for a year while I was actually going crazy to they finally diagnosed it. Imagine them telling me I need no pain meds. Well I am now in a clinic. I have a patch and take neurontin, trasdone, lortabs, wellibutrin, felixerale. Do I still hurt? hELL YES
  6. Mikie

    Mikie Moderator

    Welcome to our board.

    One of the things we do not recommend that our members do is post their e-mail addresses here. In the past, members have received viruses, lots of spam for products, and even porn. There are lurkers who watch public boards to prey on people who post their e-mail addresses.

    An e-mail address is a door into your computer, so please be careful where you post it.

    Love, Mikie
  7. Donna7

    Donna7 New Member

    I know that must of been hard. I don't understand people. What part don't they understand? I have 2 cousins just like that and they are always trying to tell me nothing is wrong with me. I am to young to feel like this. My body feels like it is 100 yrs old and I am 54. I hate it. I am sick of it.
  8. Mikie

    Mikie Moderator

  9. pammy52

    pammy52 New Member

    is the one of the hardest parts of this DD that I have had to deal with.
    This board has provided me the much needed validation that
    I have done the right thing 'for me' by no longer expecting or needing the understanding of people who just cant or wont accept the concept and limitations of FMS/CFIDS.
    I am still working full time and do get out at times for
    social activities. Now that my kids are grown and on their own I do not have the family and domestic responsibilities 24/7 that were so draining yrs. ago.
    I divorced 3 yrs. ago because I could no longer deal with an alcoholic and all the energy it takes to be married to one. I wasnt getting any support or understanding from him and letting go of that relationship was the biggest and hardest thing I had to do until after I did it. Then I realized what a wonderful thing I did for myself. That done it has been less traumatic to 'allow' other people in my life who dont 'get it' to not have to.
    I do not share how I feel with them and I keep them emotionally at arms length.
    It is human nature to want people to understand our pain and suffering but it is not worth all the energy it takes to try and get them to. I decided I was the one that needs to not try to understand why some of the people in my life just wont accept my illness as real. It's not that there arent times when I still feel sad,frustrated or angry about
    not being understood but as time has gone by it is easier to 'accept' their ignorance.
    I have a wonderful SO and a mom and 1 child who truely get it so in that respect I feel very blessed.
  10. bamboo

    bamboo New Member

    looking for more. . .
  11. Lexied

    Lexied New Member

    Ever since I got sick with FM/CMPS, it seems like my family has pretty much abandoned me. At first they were supportive and helped me get to Doctors or anything else I needed. They were obsessed with finding a diagnosis and when I got one, and they realized that I wasn't going to be immediately "healed", they just stopped everything. My Mom and I have always been joined at the hip and now I hardly see her. I'm lucky if I talk to her once every two weeks or see her once a month, and she only lives 30 minutes away! Before I got sick we would hang out all the time... we'd go shopping, or out to lunch and do "girl stuff". Now that I'm almost completely home-bound she doesn't come see me. My Dad has a lot of Chronic Back Pain and is not very well himself... I thought if anyone would understand what I'm going through it would be him, but he thinks I'm just depressed and there's not really anything else wrong with me! He has even told my Pain Management Doctor that my ONLY problem is depression! My Doctor confronted me about it today... He kept asking me how often I got out of the house and when I told him that my severe constant pain kept me home most of the time he started handing me all kinds of prescriptions for depression ( I am already taking Zoloft & Wellbutrin). He even started getting mean with me saying that I needed to try harder and that I was causing most of my trouble by being lazy!! I have never cried so hard in my life! It really hurts to know that he would take my Dad's "Spin" on things, especially when I hardly even see him! Besides, I didn't think your Doctor was supposed to discuss your case with ANYONE but his patient!!
    The absolute WORST thing anyone can say to me is that I don't try hard enough or there's nothing really wrong with me!! I'd rather be thrown in front of a bus!
    Thank you for listening to me whine!!! I'm so sorry... I know that there are a lot of you a whole lot worse off. I'm just so thankful that I can "talk" to people that really UNDERSTAND!!

    Hugs and Many Thanks!!