Family REJECTION NO surprise

Discussion in 'Fibromyalgia Main Forum' started by monkeykat, Jun 8, 2007.

  1. monkeykat

    monkeykat Member

    Hi everyone,
    I have been fighting some depression this year as the battle with this illness gets long and weary and I've had major set backs.

    Recently, the Lake County News Herald did 3 articles on ME-CFS and featured my story in the main article.

    What makes me feel really sad is that my family continues to disregard the fact that I have this illness. I didn't expect to hear from any of them but I guess I had some hope.

    I know that i need to find family but I'm mostly housebound and cannot go to church very often. Church people tend to criticize and judge as well. I guess I really wish I had family that treats me with respect, care and compassion.

    I just needed to pour my heart out a little b/c I usually never reach out to tell people how I'm feeling. It just makes me feel sad and alone.

    Thanks, Monkeykat
  2. bluewing

    bluewing New Member

    I understand...and this is the place you should let out your feelings. You're not alone, we're here!

    It gets boring not to be able to get out and about...and hurtful that your family and others can't just say "I'm sorry you're having such a hard time, I care!" I have three or four people I can talk to, so I'm very fortunate.

    Write to always know we understand!

    Sending love..hope you have better days.

  3. mollystwin

    mollystwin New Member

    I know this hurts. I thought that with my lyme diagnosis my family would finally believe I really am sick, but some still think I'm not!

    You have been doing so much to raise awareness. I am very proud of you for that!! It's hard not to be sad, but it does help to pour your heart out doesn't it? Aren't you glad we have this message board to do that?

  4. monkeykat

    monkeykat Member

    Thank you.

    Fortunately, I have a wonderful husband. I have also been able to get closer to a friend I did't know so well and make one new friend as well since I've been ill.

    Funny, but I was so desperate when i was bedridden 20-24 hours a day and I didn't know about this board at the time so I called local churches to see if they had a counselor who would be willing to talk on the phone as I was housebound and too ill to get out much. I just needed to resolve the issue as to why people were all dropping me like flies as it was so confusing to me.

    Anyway, I found a woman who was finishing up her counseling degree. We would talk on the phone. She really helped me understand family dysfunction and helped me learn to forgive and let go of my anger and hurt. She became a good friend as well.

    I've been very fortunate. I guess it's just all a process of accepting things you don't want to accept. I would like my family to act different but I can't change the way they act so I just have to accept it and move on.

    Anyway, thanks for the support!!!

    I'm jumping off the computer now as I'm wiped out..

    Keep Hope Alive, Monkeykat
  5. monkeykat

    monkeykat Member

    Hi mollystwin,
    Yes, you keep hoping that something will get through.

    What I've learned is that "people hear what THEY want to hear" What people believe has nothing to do with the truth. They believe whatever fits their personal agenda best.

    I'm learning that I have to stop defending myself and stop trying to convince anyone b/c I don't have that power. I only have the power to forgive and let go. I also have the power to set limits and not have much of a relationship with people who don't treat me with respect and care that I deserve.

    Yes, it helps that I have a safe place here to share my hurt. I know you all relate and care so much.

    I think that sometimes it's just nice to know we're not alone and we're all struggling together to be courageous, hopeful and overcome negative feelings and situations.

    Keep Hope Alive, Monkeykat

  6. IntuneJune

    IntuneJune New Member

    "Letting go" will be a gift you can give yourself.

    We are much more aware of challenges people face because we are in the midst of the muck ourselves. So you could consider us enlightened. (OK, this is a stretch, but go with me a minute.)

    With your enlightened intelligence, forgive those who hurt you with their attitudes and words.

    This can be an empowering feeling for you.

    Love, June
  7. dinilaa

    dinilaa New Member

    Hi MonkeyKat

    I know how you feel, as I am in a similar situation.

    Its hard to find the physical energy to explain and counter all their erroneous ideas on what this illness is/is not to family. Also, they have preconceived ideas about us and I think that also determines how they respond or whether they do at all.

    Sometimes, its not that they don't believe etc - but they find it all too confrounting and it brings up so much stuff for them - that its easier for them to pretend its not happening or that its "not that bad". Some of them are just inept at being able to talk about it. It reminds me of the silence you get greeted with when someone close to you has died: "what ever you say, dont mention (the decesased)" ..when in point of fact, you want people to want and need to talk. Then of course, if you raise it, you find that these people get so choaked up by their emotion, that they cannot express a damn thing - they do not know what to say (though saying just that, is at least something and goes some way to opening up a much needed dialogue).

    Anyhow, I know what your going through and I commend you for putting yourself forward for those articles, especially given your families lack of acknowledgement.

    Your family/friends will get it, one day, something will speak to them in a way that you have not been able to. Until then, I think its important doing what your doing: sharing your story and raising awareness - at least that way, your fighting for this illness to be acknowledged in the wider community and in doing so, maybe the next sufferer who is diagnosed wont have to endure the painful silence from family, that you and I and others currently endure.

    Keep speaking out MonkeyKat. I get the feeling that as you do and reach out to others, you might see a change in your family. Just a hunch.
    [This Message was Edited on 06/09/2007]
    [This Message was Edited on 06/09/2007]
  8. fabricaholic

    fabricaholic New Member

    I know just how you feel.I went threw that about 2yrs ago, not with family but with my work and friends. some of them actually looked me in the face and said "it's all in your head" I had coworkers (behind my back) saying "I was faking cuz I wanted attentin" Both a bunch of whooy.

    I have recently found this group of wonderful people, and you can ask them anything and someone here WILL understand all you have to do is reach out. I'm not a very good reacher outer and am learning to do that more and these folks have given me that oppertunity they are wonderful here.

    just know you have a family here with us.

  9. NyroFan

    NyroFan New Member


    I needed some time to mull that over myself. I have virtually no family.

    I have my sister in Florida. She has been sweet over the years.

    When I want to channel what is in my prayers and dreams....of course (not better, unfortunately) I look at the postitive life signs, such as my dog.

    Crazy as it sounds my dog and me have a medallion we wear.
    It has to do with the prayer of St.Francis of ASssi.

    Simple serenity.

    I know how it is to open your heart out to people who will not hear. Thank you for being here, Monkeykat.

  10. dinilaa

    dinilaa New Member

    I wonder how many of us had relationships (prior to the illness) where we were struggling on some level, to be acknowledged or our experiences validated or accepted or believed etc? Least I found that to be the case. So it was rather ironic that I found myself with an illness that is not acknowledged and in a position, where once again, I am having to prove or demonstrate something to others.

    I finally got it. I dont have to prove myself to anyone. I give people who doubt me or call me into question, a very wide berth. I get it now - they are not for if they are not for me, then are they against me? Do not know, but I do not hang around to find out.

    You hit the nail on the head Monkeykey when you said:

    "I'm learning that I have to stop defending myself and stop trying to convince anyone b/c I don't have that power. I only have the power to forgive and let go. I also have the power to set limits and not have much of a relationship with people who don't treat me with respect and care that I deserve"
  11. dollinitup

    dollinitup New Member

    my husband and x-sister in law are the only ones i can count on.

    i have a sister that is 14 yrs younger than me and she has fm. wouldn't you think she could at least ask me how i am when she calls me. she lives in another state. she still works and is pretty active. my dad never ask how i am. he only wants to know when i am coming for a visit so i can take care of some things for him.

    my brother lives just a few miles from me, i hear from him if he needs something.

    too bad u can't choose your family.

    many of us can not count on any understanding or compassion from family,

    i don't know why that is, but i am sorry after all you have done for our cause that your family can'tat least acknowledge what you are dealing with.

    try to rest and think pleasant thoughts and remember we are always here for you in our cyber way.

    gentle hug
  12. jole

    jole Member

    Yep! My husband's brother asks how my therapy is it will solve all my problems!. My hubby said that is not the cause of my problems, but they just don't get it....

    Anyway, YOU are a very special person, and have done so much for all of us! Your family may not understand, but we do, and maybe the reason you have this DD is to speak out for the rest of us who can't. I honestly feel there is a reason for each of us and we just need to find it....although I haven't found mine yet!!!

    Just want to say THANK YOU for all you have given us....
  13. jasminetee

    jasminetee Member

    "I wonder how many of us had relationships (prior to the illness) where we were struggling on some level, to be acknowledged or our experiences validated or accepted or believed etc? Least I found that to be the case. So it was rather ironic that I found myself with an illness that is not acknowledged and in a position, where once again, I am having to prove or demonstrate something to others."

    I was just thinking about this the other day. It's true for me. I agree with your conclusion that we don't have to prove anything to anyone and I agree with what others said here about giving wide berth to those who seem to be mistreating us.

    I wish we were treated better by our family and friends. I'm glad we have each other here.

  14. monkeykat

    monkeykat Member

    wow! I'm pretty overwhelmed by all the responses. I guess God has given me a lot of family on line. It really touched my heart that you all cared enough to respond with such understanding and kindness.

    I'll write more to each of you personally tomorrow. I'm feeling pretty ill today. I started my period and that really throws me off pretty bad for a number of whole system goes beserk.

    i'll write more later!

    Keep Hope Alive,
  15. dkbinpain

    dkbinpain New Member

    The reason I am on this site is because nobody I know can acknowledge I am hurting, in pain, and sick. I feel soo alone, I cant work except part time odd jobs and family don't even try to understand, they think I should get over it and get a job. I have nobody to understand. I don't know what I am going to do at this point, try to file for ssi and try to support myself best I can I guess. I'm right there with you......
  16. monkeykat

    monkeykat Member

    Hi dkbinpain,

    I'm with you too!!!

    I hope for more family understanding and support but I'm not going to expect it or let myself feel too badly if I don't get it. I'm moving forward with or without their support which is really hard to do both physically and emotionally.

    I'm so sorry that you have no one, dkbinpain. There are many people who are all alone on this board and will also understand what you are going through.

    It's truly devastating and really hard sometimes but I am living proof that it's possible to find friends even when you are severely ill. Read what I wrote above about calling churches to find a counselor who became my friend.

    I have found that I have to run through a lot of people trying to find a few understanding and caring people but if you can find one or two people who understand and care than it's worth it. Don't give up trying. We have to face a lot of rejection and rudeness and let go of it in order to find people who don't treat us that way.

    Many people won't understand and many people reject us. Expect it and move on! Be determined to find a couple good people. I'll pray that you get an idea of how to find a few people in life.

    Do you have a good lawyer. My lawyer (actually paralegal), Anne Lang, is from Rochester, NY and she is so compassionate and has won many cases for people with CFS and FM. Maybe she can refer you to someone in your area. Her number is #1.877.883.9443. I just won my SSD case yesterday!!! whoo hoo!

    Keep Hope Alive,

    [This Message was Edited on 06/14/2007]
  17. monkeykat

    monkeykat Member

    Hi intunejune, dinilaa, fabricaholic, nyrofan, msboni,

    I really got a lot out of your responses to me and I just spent quite a while writing individual responses to each of you and then the computer deleted my post!!! Ugh! I can't believe it and now i don't have the energy tonight to respond to you!!!

    Thanks again for your responses. I'll try to respond more another day...

    love, Monkeykat
  18. monkeykat

    monkeykat Member

    Hi jole, teejkay, prickles, dkbinpain,

    I really enjoyed reading your responses and I just spent quite a bit of time responding to everyone on here but than the computer deleted my post and now I'm too exhausted to do it again! How about another day:)

    thanks again,
    love, Monkeykat
  19. jasminetee

    jasminetee Member

    I know how frustrating that is to lose your long posts! Sometimes if I write a lot i do it in Open Office and then COPY and PASTE it in. Another thing I do is RIGHT CLICK and SELECT ALL and then COPY as I go along so if i lose it I still have it to PASTE back in.

    It's easy to lose what you've written if you go back and forth between your post and what others have written too. I wish there was a feature on here that would allow us to see what everyone has written in the thread with a scroll bar on the same page we write our posts.

  20. monkeykat

    monkeykat Member

    Yes, I completely agree with you about "letting go".

    I have chosen to do that over and over now for many years. It's a process. I have not chosen to cut my family off but I've been tempted at times. I've chosen to allow them in my life even if they disregard me and and choose to ignorant of my condition.

    I am learning that I cannot let their "questioning, minimizing, discounting, demeaning, ignoring, abandoning behaviors and also their false accusation and twisting things I say" into my spirit. I am learning that the judgements and "LIES" of others have nothing to do with me.

    I am learning that I am a wonderful person and people who are in my life are truly lucky to have me in their life b/c I have always treated others with compassion, sensitivity, honesty and respect. I am also lucky to have them if they treat me with the respect and dignity that I deserve.

    So yes, I have learned that forgiveness is an executive decision and that I may not feel like I've forgiven someone but I choose to do it and continue to release all the bad emotions and feelings. i choose not to repay others for their wrongdoing. If I'm having trouble wanting to forgive than I ask God to help me want to make that choice.

    I've learned that NOT forgiving only hurts me and makes me bitter and angry in the long run. To avoid negative emotions in my heart I also spend time each day raising my hands and literally sending blessings to each and every person who mistreats me or who has abandoned me. I ask God to forgive them b/c they don't know what they are doing. I ask God for the grace to treat them with kindness and compassion if they are ever in my situation. This is quite a challenge at times b/c I believe so strongly in justice but I'm learning to surrender my beliefs in justice to God and ask God to bring justice to my situations.

    I felt a lot of justice was brought to me when the newspaper printed an article recently which stated all the facts and truth about my life and my illness. What an amazing way to "redeem" my name and put truth out there to my family who lies about me.

    Anyway, thank you for your encouragement to "let go". It's great advice

    Keep Hope Alive,

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