Why Others Don't Understand

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Feb 8, 2003.

  1. Mikie

    Mikie Moderator

    In one word: Denial. We are not the only ones who go through the grieving process; our friends and family lose a lot too when we lose our good health. It is even easier, IMHO, for them to become stuck in denial long after we have moved on to acceptance. I believe family counseling is essential where this is a problem.

    Friends, employers, and the community at large are more likely in denial out of fear (there but for the Grace of God...).

    There is a plethora of posts here on a continuing basis due to this situation and the stress it causes those of us who are sick. We absolutely must deal with this situation one way or another in order to reduce our stress. This may mean changing or quitting our jobs. We often cling to the impression that we have no options in this area. Believe me, we do have options, but they may have side effects we may not want to accept. By the time we ignore this reality and can no longer get out of bed and go to work, there are no more options.

    The same is true of our relationships. We may have to leave lovers, friends, and spouses if their presence in our lives adds to our stress. This is a horrible reality, but a reality nonetheless.

    One thing I know for certain is that we need to stop dancing to others' tunes and trying to convince them we really are sick. We know we are, but when we act as though we owe it to others to prove it, we use up precious energy and invite stress into our lives. The harder we try, the more convinced they become that "we protesteth too much." It's self-defeating behavior.

    Nothing is more heartbreaking and stressful than watching our loved ones slipping away--except the lonliness of living with someone who is supposed to be loving and supportive but who is angry and defensive with us. If therapy/counseling doesn't help, it may be time to cut the ties. In the long run, this will decrease our stress, but that is hard to see at the time.

    BTW, it isn't just we who have to deal with this; it's common in anyone with chronic illness, kinda like insult after injury.

    So, my friends, I suggest we all hold our heads high, convinced in our knowledge that we are sick. It helps if we are actively engaged in researching and treating our illnesses. This empowers us and helps us focus on what needs doing to heal rather than getting sidetracked into hopeless, stressful digressions.

    Love, Mikie
  2. tinaeve

    tinaeve New Member

    I turned on this morn to this board to do somw whining.I am trying so hard to feel better but nothing is helping.I have had a headache for 5 days that won't quit.Missed work on fri. and am sick at the thought of going in tonite(i am a midnite shifter).Just stressing over it makes my shoulders tnse even more.Bu your post helps with the sadness.Knowing you all are out there caring and supportive eases my mind somewhat.Thanks for being there.
  3. Dara

    Dara New Member

    that was a wonderful posting you did. So very true, too. I have or had a "best friend" since high school, 40 years now, and we were very close. As I got to the point where I would have to cancel plans and not be able to keep up there was definitely a difference in our friendship. I have chosen to cut the ties because I can't help but feel that if she was the friend I thought she was she would be there for emotional support, which she was not. She was even cruel enough to make fun of someone she works with who "claimed she couldn't work because of FMS". She knows that the reason I'm not working is because of FMS. It's really hard to discover that about someone we know when we think we knew them so well.

    Again, thanks for the great post. You have a wonderful way with words.

  4. Debbi

    Debbi New Member

    I am very new to this site so plse be kind - just read your submission and was moved to reply - it is hard to have an un-seeable illness - we need to remember that we are not alone and that we need to focus on our needs and not just try to convince others that we suffer - while reasearch is an excellent way to confirm the diagnosis, I believe that sharing with others is a form of treatment and I'm glad I found this site.
  5. klutzo

    klutzo New Member

    Toxic people can destroy all our progress. I could not have said it better. :) Klutzo
  6. Mikie

    Mikie Moderator

    I think relationships take a lot of work under the best of circumstances. Unfortunately, chronic illness can undo even some of the best relationships. I just think we need to conserve our energy and know when to cut bait.

    We are the only ones who understand what it is like to be sick with our illnesses. Thank God we have each other. I've said it before, but it bears repeating: The people I've met here are some of the finest I've met anywhere.

    I think what we go through makes us very strong. We are heroes and heroines every single day as we find ways to cope with what often would break lesser persons. I salute all of you, my friends, as you go about living with such huge challenges, and I thank everyone who reads, researches, and shares so generously to help us heal.

    Love, Mikie
  7. Sunshyne1027

    Sunshyne1027 New Member

    Everything so true in what you said. Some great thoughts.

    I know just a couple months ago or so if reading it, I wouldnt have really paid much attention. I wasn't at that "level", "faze"... Etc. To truly take it to heart and understand.

    I have been through so many jobs, and have lost them all, and it came time to just put the towel in and say hey need help. Thats why I am getting help with vocational rehab. If it dont work out, then going to go for disability.

    Its hard to make the decision to go on disability, or quit working to get better. Especially if one is materialistic. Thinks they just cannot survive without that extra money coming in. I can understand if one continues to work though.. Just to make ends meet. Except I tryed that route, and it made me more sick, calling off work more, then losing jobs. Darn if you do, darn if you dont.

    Just wanted to say good points and great reading it all.

  8. hope4

    hope4 New Member

    Well said Mikie! You are a source of encouragement to us all.
  9. nancyneptune

    nancyneptune New Member

    Mikie, even with doctors now, I don't bother to tell them how much it hurts or where it hurts. That I can't sleep, work, walk, read, think.
    Even my Rhuemy has turned on me and told me to go to my shrink and get my drugs upped. He said I'm stressed, depressed and unhappy. Oh DUH! Doc! It's because of the pain, you ASS!
    So now I'm just going to go to the pain specialist and get what I need. I've had it with all other doctors. No more, never again.
  10. Spritzer

    Spritzer New Member

    Dear Mikie hello i`m new..just struck by your eloquence (have i spelt that right??)
    Denial is so safe and so powerful. i think very few non sufferers have the courage to overcome it.
    Hello and best wishes to all Spritzer
  11. BonBons

    BonBons New Member

    Hi Mikie - you may not even get this because I'm just catching up - been down a while with one thing or another (not to mention useless doc appts). This was so eloquently stated and timely for me; my appreciation for all you do here on the Board and for such a heartfelt and objective essay, worthy of publication. Take care of yourself, Mikie, as you do all of us. BonBons
  12. pamela

    pamela New Member

    Thank you so much for all you do. This post is a little God send.. I just wish everybody in the world were as nice and wonderful as you and everyone else on this board. I wish we could all meet some day and just give each other a hug. Love Pamela
  13. Mikie

    Mikie Moderator

    I forgot I even posted this. I'm glad it has helped you guys. Y'all are so sweet and generous with your compliments. It makes it all worthwhile just knowing that something I wrote has helped someone.

    Love, Mikie
  14. Reg1

    Reg1 New Member

    I give you the ultimate standing ovation. Just one comment, before i was dx in Oct 2001, i thought i had a freind of 20 some odd years, well she had an anurisim, during that time, another freind and myself hepled her out tremendously, t, even saved her mortgage. In shortt term when i was dx and explained my illness to her, she said she really didn't want to talk about it, so that's been a while, and believe me she will get her wish. From this day forward i plan to let noone stress me out anymore, i don't care who it is. Your words were so powerful, it bought me to tears, but also made me stronger. Thank you my friend. ((((((((Gentle Hugs))))))))) Reg
    [This Message was Edited on 03/02/2003]
  15. selma

    selma New Member

    I appreciate and am greatful that you are here, and posting.
    You have done so much and YOU keep on giving.
    Thank GOD.
    Love and hugs, Selma
  16. dan0248

    dan0248 New Member

    I couldn't agree more, very, very, very good. Life is what you make out of it. We all have good days just the same as we all have bad days.
  17. pearls

    pearls New Member

    This is my third year with fibromyalgia and in many ways the hardest - even though I have the pain meds I need, at least most of the time. I can't keep up with work and I notice a lot of people around me are not very tolerant with me. I used to be REALLY SOMETHING. Now, there are some people in my life who seem to think I'm really not much at all. Hard to accept, you know.

    My husband and I have been working through this, and when I do some stupid thing like leave the oven on, it makes me smile a little bit to hear him say, "I'm not irritated," when I know he is, but is learning how to live with the new me. We aren't the same with each other, you know. Things have changed. But he has helped me through the first step towards retirement when I haven't been able to attend to it. He's losing a lot here, too. If I were to stay for more years, we'd be in better financial shape in our retirement. We've worked hard to get where we are. This makes me so sad - and I'm scared.

    By the way, a really dear friend said to me the other day that she misses the old me. She's never heard of "I miss me," or whatever it is. I don't even have the go to look it up to make sure I don't put down the wrong thing and look uneducated. I've always done that before. Still do it most of the time, but I'm getting worn out.

    Thanks, Mikie.

    Soft hugs to you,
  18. camelgirl

    camelgirl New Member

    just for being here as a STRONG source of experience and support...i agree, why should we waste our precious energy on trying to defend the life that we were given...the rest of the world doesn't need to understand, we have to make peace with ourselves and live the best life we know how.
    god bless, camelgirl
  19. Lau

    Lau New Member

    It is so good to know others understand. I'm so glad I found this site!

    In my experience friends and family try to understand it all but cannot. They want the old "you" back (like we don't). Many friend are good-time friends, and if you do not partake of the good times often enough they stop calling.

    I have had many a flare-up trying to please others by being my happy-go-lucky old self, by trying to do things I really can't. It is very hard to find a balance where you can stay connected to people without hurting yourself to much. Everyone gets tired of hearing complaints, so you just try to put on a smile "I'm fine thanks!". It all gets so old. Others have expectations of you based on how you were 'before'. I have a hard time not trying to please everyone else at my own expense. I really want to be that person that they all want, especially for my husband of 27 years and my children. I thank God every day that I have them.

    Anyway, I'm rambling. Thank you for your post, It really helps to know others understand.

    Wishing you all "Good" days and much happiness.

    Love, Laurie

  20. Mikie

    Mikie Moderator

    The sad reality in our family is that we do understand because we all have, or had, FMS, my Mom, my daughters, and I. I also have CFIDS and one of my daughters has vulvadynia and interstitial cystitis too. We are the poster family for these illnesses. Both my sons-in-law have struggled with coming to terms with the girls' limitations and I know it isn't easy.

    Even before I was diagnosed, I knew something was very wrong. I've been sick 12 years and diagnosed only 2 years. I have remained single by choice because it just seems easier. Now that I am improving, I may try to get back into some kind of social life because I don't think it is healthy to not participate in society. I've become somewhat of a hermit, but it conserves energy which is so precious. I do have an awful lot to do around here to get things back into some kind of order before trying to go back to work.

    I have a cousin dying in Colorado and I'm trying to get the energy to go back for a visit while he is still alive. Traveling all day on a plane is very difficult for me. I haven't been back in a couple of years and need to see family. I can stay with my older daughter and her husband. They were just here for a visit, but I haven't seen my new granddog yet.

    Well, friends, I have digressed here. With a lot of love and acceptance, we can still live very fulfilling and meaningful lives. I also believe that many of us can improve our health with lots of trial and error and lifestyle changes. We will probably never be the candles we were, burning our wicks at both ends, but that isn't healthy anyway. We can become soft, gentle lamps spreading the light of love for all who choose to gather round us.

    Love, Mikie