A nonbeliever

Discussion in 'Fibromyalgia Main Forum' started by shalyn840, Feb 19, 2007.

  1. shalyn840

    shalyn840 New Member

    I believe I saw a post further down the board about this, but the thread was rather long.

    There are alot of nonbelievers out there regarding FMS. I posted on the previous thread that I have decided not to tell anyone that I have it. Those I have told about it, and don't believe me, I just keep my mouth shut around. For the most part, I live in my own silent painful hell.

    Anyway, the worst nonbeliever in my life is my own mother. She does not believe at all that I have FMS because there is no "test". She also does not believe I have rheumatoid arthritis either, even though I have the x-rays to prove it. I also suffer from bipolar disorder - going on 20 years now, and she also doesn't believe this.

    About 3 months ago, she bluntly told me:

    "You know what, I don't think there's anything wrong with you. You need to get off all of your medications. There, I finally said it to you."

    I can deal with coworkers and friends. I can deal with siblings and extended family members. But - MY OWN MOTHER? I just can't let it go.

    I still don't tell her anything anymore. Heck, I don't even tell her when I see the doctor - why bother? But, I still can't help obsessing about her lack of compassion and understanding.

    Does anyone else have this problem? If so, how do you emotionally deal with it?

    TX
  2. mollystwin

    mollystwin New Member

    I have this problem with coworkers, friends. and some family members. My mother and father died before my diagnosis, but I know in my heart they would believe I had an illness if I told them.

    I cannot comprehend what you are feeling about this, but I know it must be awful. I don't know how you would emotionally handle something like this, I hope others can help you answer this question.

    Have you tried giving her literature on the subject? Or how about showing her Prickles documentary on her website? Prickles own mother is on the video. Maybe that will help.

    I don't even know what else to offer except that I feel for you. I get so hurt when my so called friends and family treat me this way. But mothers should support their children no matter what.

    God bless.
  3. Slayadragon

    Slayadragon New Member

    What's your relationship with your mother like in general?

    Best, Lisa
  4. Shananegans

    Shananegans New Member

    I couldn't imagine my own mother, but my best friend (who also happens to be my 1st cousin) is a non-believer and her mother (my aunt) has it as well. She doesn't believe it's real and her own mother suffers with it. Now... her mom doesn't suffer as bad as I do, so she told me that even if she believed it existed, it couldn't possibly be as bad as I "try" to make it out to be. To her it's not possible for a syndrome to vary so much from one case to the next... She thinks I over dramatize everything and since then I have discontinued our friendship and have also tried to rekindle a friendship but with no success.

    We were born 1 1/2 months apart and have been attached at the hip since up until my FMS got so bad I couldn't function normally anymore. That was about the time our friendship fell apart and that was after 20 years of doing everything together. And I'll tell you, it still hurts 7 years later. I honestly couldn't imagine what it would feel like if my mom was like that, but then again, my mom has to understand, she has FMS too. The only thing I could recommend is to sit her down and ask her if she believes that AIR is real. You can't see that and yet we all know it is there. Start with that and maybe someday she'll come around to understanding that not everything has to have a perfect test in order to be real.

    I wish you the best and hope you can get your mother's support. I don't know where I would be without mine.

    Big Hugs,
    Shananegans
  5. CrymznWych

    CrymznWych New Member

    At first I had a similar problem with my mother, it took sitting down with me to help fill out the disability paperwork for her to really "see" the big picture. Up till that point she was dead set on the idea that it was just a matter of getting away from the computer (she's a technophobe, and computers are evil) and getting active.

    She didn't get it wasn't that easy, didn't get how badly I wished it were. It's tough enough when friends and co-workers don't get it. But it's a whole nother ballgame when your mother, the one person you should be able to talk to, doesn't believe you're ill. Sometimes she still slips into that "why can't you just buck up" kind of attitude.

    Like you, I don't talk to her much about it even now. We've always seemed to meander thru subjects when talking, but this seems to be especially hard for her to talk about. I think a big part of that is one of my brothers passed away in 2001. I think the idea of another of her kids being sick scares her. I understand completely how hard this is for you, I just wonder if part of your mother's problem isn't also fear. Either way, you know what's wrong, you know it's real, and hopefully she'll understand someday, and be able to give you the kind of support you need.
  6. spacee

    spacee Member

    I can't work. I just had a couple of weeks where I thought I might not be able to pay our bills any longer cause I couldn't add very simple numbers. And I thought I might have to give up driving out of town because my brain function was so low.

    My two best friends and my sister told me during this time within a few days of each other:

    1. You need to do volunteer work.

    2. You need to get a "little" job.

    3. You are no different than any other person our age.

    When you have had enough, you have had enough. One of these people is no longer my friend. I didn't really say anything to her but she knows I have distanced myself and she is fine with it. Me too. Because enough was enough.

    Hugs to you,

    Spacee
  7. achingbytch

    achingbytch New Member

    Hi shalyn
    Mothers, friends,employers...its a long list of people who deny what's inconvenient for them to accept. We do it too...my mother lived most of her life in denial, it was the only way to survive the pain in her life. As for my life and the pain she caused, her solution was to tell me 'positive thinking' is the best way to overcome everything...illness, depression, you name it, just think good thoughts and it all goes away.
    I've decided it takes too much of my energy to spend time trying to convince anyone how ill I am, I have the paperwork to back me up and I'm sure most people on the site do too. Don't let stupidity get you down, you know the truth.
    [This Message was Edited on 02/19/2007]
  8. Slayadragon

    Slayadragon New Member

    I think that what really gets a lot of nonbelievers (although not _necessarily_ TX's mom) is the glamorized idea that if people with illness try really hard, they can accomplish anything.

    Look at these heroes, for example:

    Helen Keller
    FDR
    Christopher Reeve
    Stephen Hawking

    They are examples of how sick people are "supposed" to act, according to our society. You're supposed to push yourself so that you accomplish at least as much as a normal person, if not more.

    The problem with CFS (and also to at least a certain degree FM) is that pushing yourself causes things to get worse.

    That's something that is incomprehensible to most people (including those who first get CFS). If they don't see you pushing yourself as hard as you can at every single minute (especially if you don't seem too worn out some of the time), they think you've given up. If you would just not be so discouraged, things would be fine even if you are sick.

    I have been able to tolerate many people over the years who haven't "understood" my illness. Basically I just didn't talk about it to them. If they wanted to think it was just a minor inconvenience, that was fine. Exactly how much stuff I was doing on a day-to-day basis wasn't their business anyway.

    For instance, I loved my grandmother dearly, but she didn't understand my illness at all. This was a conversation we had when she was age 90 (and still working 60 hours a week running the family flower business):

    Grandma: I get really tired, but if I just push myself, I feel better. Don't you?

    Me: Umm, no. When I push myself, I feel a lot worse.

    Grandma: You do??? (Changes subject.)


    My grandmother never understood that I was really sick, but she never accused me of not being sick and always was tolerant when I said I needed to rest. That's all I want from people, whether they're age 19 or 39 or 69 or 99.

    The people I had to cut off were those who supplied me with motivational quotes. I can take not being believed, but being actively told that I was being lazy and/or lacking in feelings of self-efficacy really ticked me off.

    Anyway, CFS is a totally different paradigm of illness than any other in that doing less is _necessary_. So it's not a surprise to me at all that people don't understand it. And I can forgive them for their quiet lack of understanding.

    But I'll be damned if I'm going to let them openly pass judgment on me about it. I don't let people pass judgment on anything else that I do or don't do with my life, and I'm certainly not going to let them on this either.....no matter who they might be.

    Best, Lisa



    [This Message was Edited on 02/19/2007]
  9. Shalala

    Shalala New Member

    My Mom was the same way. It hurts. She died almost 2 years ago and really suffered. My Dad, sisters and even my own son have no compassion for my situation. I finally cut off all relations with my sisters and pretty much with my Dad. Sometimes you have to just end toxic relationships. I could care less about my sisters but it is really hard knowing your only parent could care less about your health. I rarely talk to my son either. And ... I feel better. I cried it all out over the years and there is nothing left to cry over them. I have my cat. I know it hurts (((((((( hugs )))))))) good luck to you.
  10. Grammcrkrs

    Grammcrkrs New Member

    Wow Lisa...you really said it well. Especially the part abuot pushing ourselves makes us worse, and yet why can't we be like Helen Keller, etc. !!

    My mother does NOT believe I am really ill either...oh she realizes I don't feel great, but thinks I'm being namby pamby about it, and has suggested in times past that I should get out and do more things (than I already am doing! like doctor visits, grocery shopping, etc)...and she thinks it's terrible my husband goes to the laundromat (so do others).

    She also got mad when I broke my foot 21 years ago..saying, "What did you go and do THAT for!" as if I WANTED to get sick.

    I'm able to keep a fairly clean house(it's not junky or messy or dirty)...I do all the bill paying and spend lots of time on the phone when info has to be gathered for forms and applications, etc...but not many understand I need to pace myself. Or that doing lots today, and pushing myself!! means that tomorrow I won't be able to do a dang thing, and that sure means I can't help my mom!

    Thanks for letting me vent........I"m so glad to read about others with the same problems.

    .....Gramms.... OH..my g/daughter has ME/CFS..she lives with and we try to understand each other!
    [This Message was Edited on 02/19/2007]
  11. hollie9

    hollie9 New Member

    When I was first sick, 11 years ago, I could not shop, drive, talk on the phone. My mother offered no help, just ignored my situation.

    Since then I have given her all the research and more...When we talk on the phone she says:

    "Aren't you over that yet?"

    Another favorite is to tell me I am just not thinking positively, if I only thought about wellness, I would not be sick.

    Another is to pepper me with mail about health supplements that she usually is selling in kind of a Ponzi scheme.

    She keeps berating me to come down and help her "move her stuff" to a storage area...as if I had the physical strength to do that.

    Her belittling of me for being sick is, well, sick.

    I believe she's so fearful I won't be able to care for her in old age that she's gone totally into denial.

    I don't talk to her much, I do pity her.

    What a terrible mother she's been...I hate Mother's Day.

    Hollie
  12. LouiseK

    LouiseK New Member

    Yes, I feel that no one on earth really truly understands and many do not even believe. My mother, before she died, kept saying "Is it MS or not???"

    As to your mom . . .I'm afraid I have said hurtful things to my own daughter. Thoughtlessly. Not meaning them the way they were heard. Trying to "shake her out of something" Or maybe just the frustration of not knowing what to do.

    So I am thinking from the perspective of a hurt child and also from the perspective of a possible perpetrator of this kind of deep hurt. For your own sake you may want to search your soul to find forgiveness towards your mother. It will be better for you. I'm sure she loves you dearly, even if she's not too good at it.

    Maybe you can gently educate her with CDC information or other non-controversial sources. Or maybe just avoid the topic as you are doing now.

    It is tragic that our mothers can't always be what we would like to crack them up to be. They are only flawed humans. My own mother shocked me early on in her ignorance and cruelty and I've had to think about all this topic for a long time.

    But for your own sake you might want to meditate on compassion for every living thing for a while and then you might be able to bring it down to mom.

    Best of luck to you. I feel your pain.

  13. Ldyravenstar

    Ldyravenstar New Member

    Hi every 1 I am new here. I read this one & the following posts. It seems 2 me alot of you have relatives &/or friends who dont believe in you. My family & friends have always had me 2 fall on, now it is the other way around. I have a weird family yet I can rely on them for support. My friends havent changed, nor their opinions or love 4 me, & my spouse, he's picked up where I leave off, He truelly does alot. I can see where some ppl can & do change when some1 is ill. I know I have, yet ev1 stands by me. So the moral is, these ppl in your life that turn their backs on you perhaps never really cared in the first place & the ones that do will be there for you no-matter. Thats how I feel on that. Raven
  14. momof471

    momof471 New Member

    I've found that family members can be the most cruel. Duringmy three years of dealing with this so far, I have not had one offer of help from my Dad and Stepmom. I often get the why didn't you do this or why didn't you do that, when it comes to other things. My grandmother totally ignores it. Its hard.They get mad cause I don't visit them that often, well, I've got four kids and a husband working his butt off and what energy I do have belongs to them. I hate having to give excuses for why other things don't get done. I have alot of anger when it comes to this. That being said, I wouldn't won't to be in their shoes as more info comes out about these illnesses. I think it would hurt unbearably to have misjudged what someone has been telling me all along and just writing it off.
  15. Suzan

    Suzan New Member

    I think we all go thru varying degrees of this..but it is the worst when it is a parent..or sibling..that won't validate what we are dealing with.

    I have 2 sisters...who totally ignore the fact I am sick. My father before he passed...called me and said, "I know a woman who has FMS, and she is a drug addict..I hope you aren't going to be one of those." My mom , first sent me all sorts of news articles..and miracle cure type things...she would tell me I needed to exercise...etc etc. BUT..lucky for me..she has paid attention to the info I told her as I learned more..and now she is pretty supportive of me..even tho I think she doesn't really understand what happened to me.

    I have lost some friends along the way...since I have to say no so often...and the ones that I kept..really have a tough time with me ..as I cannot do all the active things that we used to share. So many just don't understand how we look normal..and yet rst so much..and never get better..and often seem worse.

    I hope that you find a way to let go of the things your mom says...if you want to keep her in your life..you may just have to accept that this is how she is going to be dealing with your illness...and just keep her out of that part of your life as best you can.
    I know releasing stress..and stressful people as best I can has helped me alot. This is a lonely illness...I think that is why a site like this is so important..you find you are really not alone!



  16. KelB

    KelB New Member

    We all seem to be having a tough time at the moment.

    I've just spent a two week holiday with a close friend, who turns out to be a non-believer. He's fallen under the influence of one of those vile motivational speakers and kept lecturing me on how I'm "getting in my own way".

    I'm going through a pretty good patch at the moment but whenever I needed to rest, he just kept saying "another 10 minutes" and kept saying it until I basically just sat down where I was and refused to go further. I tried really hard for him, but there were days I literally just walked until I couldn't move any more and he still got aggravated with me for not keeping up.

    I'm lucky that a lot of people have believed me and helped me so far (doctors, family, friends, work). But it really hurts that this particular person seems to think that I've been malingering for the last three years.
  17. moab341

    moab341 New Member

    I am so sorry about your Mother. We never outgrow wanting our parents acceptance, and when they say things as you Mother did to you it's very hurtful.

    My Father believed me from the day I told him. He knew someone at his church with it, so he talked to her and got a lot of information. He even printed some things off for me.
    My best friend who lives next door to me is an RN, so she knows about FM and is very supportive. I know how lucky I am.

    The people at work on my team know because I had to apply for FMLA to protect my job. There have been a few times when I was just too sick to come in.
    They see me when I don't feel good..with the dark circles under my eyes and believe I'm sick.

    I don't try much to explain it to people.
    I've found it's overwhelms them if I give them too much information. If they ask how I am I just say, it's a good day, or it's a bad day.

    Please know that we here on the board understand and support you completely. We are your FM family, and no one can take that away from you.

    What's important is what you know in your heart to be true, and how you feel about yourself.
    This DD is not something the general population understands.
    The time has not come for that yet, but it will. Too many people have it, and there are Doctors out there who are speaking out about it.

    I wish you only the best and send you very gentle((((((((hugs)))))))) RM
  18. bluewing

    bluewing New Member

    Your daughter needs your help and compassion. The list of symptoms is long, and most of us can check off many of them.
    When MY daughter found out a name for "what I have" seven years ago I couldn't believe it (when I finally read the information she got from the computer.) It WAS me!! And I found out I'm not alone - (after 50 years.)

    If your daughter progresses as I have, she will lose the ability to do everyday things one by one...I'm afraid my next one will be standing from a sitting position, it's getting very hard. And she will mourn them, too. If I manage to do very light cleaning I can look forward to days or weeks of even greater pain. A shower and shampoo seems like an insurmountable job, or fixing a sandwich, or shopping.

    But I'm praying for better years ahead for your daughter, and HELP. I know you love her and we need love when we are sick and in pain. It scares me to death to think of MY children and grandchildren having this. I mean that.

    Would you believe a 72 year old who has been though h---
    and has FMS,CFS and arthritis? I send love to your daughter, and thank God every day for mine.

  19. sharonie

    sharonie New Member

    I just found this site and was browsing and read your note.
    I was diagnosed with Fibro. in the 1980's and have suffered along because of the comments that were said and they were from Doctors.

    Example: Don't tell anyone you have this as your Doctor and co-workers will think you are crazy and depressed.

    Because Rheum. and Doctors can't measure this by tests they bundled up these symptoms and called it Fibromyalgia. Many Doctors diagnose pts to readily and I think this is why the real sufferers are at a loss.

    To make this worse for me my Daugher who is just 17 years old was just diagnosed at a children hospital Rheum with the diagnoses as well. I find her even sicker than I ever was.

    I also think there is a auto-ammune factor as I also suffer from reaccurant TTP as well as crohns.

    I understand all those who have had insensitive statements
    said to them. Its hard to measure our pain when we look so normal.

    Please understand all of us Fibro patients have our crosses to bare. It is wonderful that there are sites to vent our frustrations and get some support.

    Take care.
  20. Shalala

    Shalala New Member

    This is an example of lack of compassion:

    Last May my 2 sisters (age 54 & 56), Dad (age 79) & I (age 52)all went on a cruise to Alaska. First day of trip ... I could not keep up at O'Hare Airport and could not get assistance. I had to walk (I use a cane) from one end of the terminal to the other. I was dragging and we barely made the plane. My sister ran on ahead and left my poor old Dad to accompany me (he would walk ahead then turn around and sigh and give me a HURRY UP frown). So we finally get to our flight and my sister says YOU BARELY MADE IT with a dirty look.

    So we make it to Seattle to meet the other sister. We get to our rooms and I just want to lie down and rest. I am beat. They insist that we hurry and go down (literally downhill!!!!) to the market place there in Seattle. I say we have to get a cab ... I cannot walk that. My sister says it is only 6 blocks you can do that (with a smirk). They all run ahead of me and leave me at the curb on the other side of the street and my oldest sister falls down (wearing sandals) and hurts her precious little toe. Guess what? Suddenly a cab is hailed. Then we get down to the market and I have had enough but THEY insist we take the short (HA) walk down to the actual waterfront. Against my better judgement I hobble down there. Of course they are all running ahead of me and my Dad is stopping and giving me THAT LOOK. Then my sister decides she wants to see Pioneer Square ... and the bus is free. She got us LOST in a really bad part of Seattle and it was getting dark and we could not catch a bus or cab in that area! Here I am all exhausted ... and end up having to hobble back (16 blocks or so instead of the dreaded original 6) to the Hotel (6 of those blocks were still UPHILL). Luckily the way the buildings are there they have plenty of ledges where I would have to sit down and rest 1/2 way up the block then start off again. Both of my sisters ran on ahead (because they were tired) and about 3 blocks from the hotel my Dad deserts me too. I could have been mugged or fallen. This was just the first day of the trip. It got worse. I will skip ahead to the last day. We got seperated at a museum in Victoria so I went and sat right outside the door we came in ... I sat there a long time and they never came out. Finally I decided I should head back to the Hotel and wait for them. They deserted me at the hotel!!! My Dad told my sisters to go back and get everything from the hotel ... And they didn't even leave me a note. I have not spoken to either sister since May 22, 2006 and my Dad is mad at ME for causing family problems and ruining the trip. Go figure. Oh ... BTW ... they ran off and left me on the ship too ... and on most of the excursions. Coming back we were to go to Van Couver Island and we had to catch a ferry. Well guess what? It was a LONG UPHILL HIKE to board the ferry and my sister turns around and yells at me ... HURRY UP OR WE ARE GOING TO MISS IT! My Dad and I had a huge fight about all this a couple of weeks ago (and have not spoken since). He keeps bringing it up and wants me to take all responsibility for the family problems. So I did ... and I told him to never bring it up again. I do not need more stress. His response to the "getting lost in Seattle" was ... we all got blisters and were tired too. OMG!!!! I had blisters plus FMS you idiots. He was right there when my sister yelled at me to hurry up ... but he saw nothing wrong with that. Then he told me he told them to go to the hotel (early) and check out that day. He was afraid we would miss the ferry? We had all agreed that we had to be back to the hotel and checked out by 2 pm. THEY changed the plans ... not me. I struggled back to the hotel (by 1 pm mind you)and everything was gone. I was crying and a lady in the lobby told me that 2 women were standing there with a lot of luggage and had just pulled out before I hobbled in. She said the one asked "Should we wait for her?" and the other one said NO. When my Dad told me the luggage was more important than me ... I yelled at him ... sorry I am nothing but an inconvenience to you all.

    Sorry ... I had to vent.