Family Won't/Doesn't Understand

Discussion in 'Fibromyalgia Main Forum' started by kariered, Jan 19, 2009.

  1. kariered

    kariered New Member


    My fiance was diagnosed with FMS over a year ago. He teaches private lessons on guitar. Since then he has been in the hospital for a staph infection (he still can't get rid of) and missed many days of work due to pain, flare ups, etc. We got engaged over the holidays. I really love him and I am working to really understand fibromyalgia. I have been there with him since the beginning...going to all the doctors, etc. Today my parents told me that they will not pay for our wedding because they think my fiance is lazy because he has lost students. They know of his fibromyalgia but I know they don't understand it. His family doesn't either. His mother is always on his case about him forgetting to do something or just not having the energy to do it. She leaves him lists every single day! (we currently live with her until we move next month) his sister and his mom both think he is exaggerating and/or faking.

    I do not know what to say to his family or to mine. I am tired of trying to explain it to them. They don't get it and they don't care if they do get it or not. We have gotten books on it, left out articles for them to read...nothing works.

    Any suggestions? Any suggestions on how to explain to my parents about him not being "lazy?" We are both devastated by their decision today. He already beats himself up enough over not having enough energy and now my parents have just added to it.
  2. puddymaws

    puddymaws New Member

    Hello Kariered,

    l am a fibromyalgia sufferer & l also have had the problem of my family not understanding my limitations.

    l decided that life with CFS was bad enough without having to deal with the critisism so l said NO to my family & although life is not easy on my own it isnt as bad as it was when l was having to cope with all that agro as well.

    You've got each other, once you have your own place things will be better & a wedding only has to cost the price of a licence !
  3. dannybex

    dannybex Member

    ..."Fibromyalgia" and "real", or "fibromyalgia" and "pubmed", and you'll turn up hundreds of pages explaining that it's a real disease and often more disabling than cancer or HIV/AIDS.

    Then print them off or send the links in an email to your parents.


  4. Engel

    Engel New Member

    Unless you HAVE IT you can't understand it ... :-(
  5. jewels920

    jewels920 New Member

    I have FM. And I have given up trying to convince anyone who doesn't understand. If people want to understand, they will.

    It hurts when people close don't "get it". But I've decided it's not my job to educate them.

    If people are treating me poorly because I have FM or for any other reason, I limit my contact with them.

    Many blessings and good wishes for you and your fiancee.

  6. rickj44

    rickj44 Member

    WE all have people that don't understand.. he is so lucky to have you..You will be his number one support and you have to understand that, it will not be easy for you as well.You will have to be a very understanding person and a person that can put your needs a side,at some point.

    AS for the parents not believing, i doubt very much you will change there minds and i would distance my self from the crititism. Nobody needs to here, negaitive comments.

    IF there is somebody in the family, they you could get on your side, then i would talk to them and give them the information. If they have a computer they could come here and read .

    My sister don't believe me and i know why.. its because she is healthy and thinks a good exercise, will cure and make u feel better. other family members don't say anything, so thats great.
    I don't think they get it either, but atleast they know enough to keep quiet.

    As far as your wedding goes, do it alone..if they will not support you, then they loose.. very upsetting, but you can always renew your vows. later in life.

    Like i said he is very lucky to have you. There are many married couples that seperate because of this illness , because its so life changing.

  7. kariered

    kariered New Member

    Wow I just checked back today and did not expect so many responses! You guys are great! Thank you so much for the insight, info and help!

    My fiance and I are both 30 years old. We're not extremely young, but not that old. So hopefully he will bounce back or at least his symptoms will go into remission for a while.

    I have already accepted the idea that I will be the primary breadwinner and caretaker. I really do not mind this as long as I can have some "me" time all to myself. When Eric is sleeping (which can happen a lot) I do get time for myself, so it's usually not an issue. We also have a yorkie and he has been the greatest dog!! He can put a smile on Eric's face even when he's in the most horrid pain and worst of moods.

    Getting a family member to go to the dr with him is a great idea. I did end up making his mother go with him to a few appointments, mainly because she doesn't work and Eric was having major trouble explaining his symptoms, etc. She did go and things did get done, however she still doesn't really understand it.

    I have made arrangements to move out of here and for us to have our own place. I CANNOT WAIT!!!! As for a wedding, well no big deal. A JP will be just fine. Much better than sending Eric into a horrid flare up.

    Thanks for all your excellent advice! I really do feel a lot better!

  8. shepherdmom

    shepherdmom New Member

    My hubby Didnt understand either I had him read this then he said it all made sence

    I have used this alot for friends and family that dont understand

    read on here :
  9. Janalynn

    Janalynn New Member

    I am not sure that finding out you have Fibro when you're younger has anything to do with recovering completely - that may be the case more with CFS. (I am really only responding to a previous post, not trying to be negative)

    Also - I've had Fibro for many years (25+), I've worked my entire adult life with the exception for a few years when I was home with my babies. Yes sometimes I worked part time, but many years full time and even had two jobs for some years. I raised two wonderful boys and was/am a very hands on Mom.

    I was only diagnosed a couple of years ago - maybe that's what makes the difference - being diagnosed or not. See, I didn't know any difference, believed that the way I felt, was just the way I was. No one could ever find anything "wrong" with me - so I learned to live with it.
    BTW- I did have some relatively good years in there.

    Only a few years ago was my pain so bad that I KNEW that this was not normal. I don't know how I do it somedays (most days) but I still work - I have to. I have no choice.

    I have a wonderful, incredible husband. We do things together. He does more of the physical things when I can't, I try to be more of the emotional support for the kids etc. We balance off each other. Your marriage will not and does not need to be one sided at all. Not in the least bit. Challenges - sure, but most marriages have those. If you have a strong love and commitment and know what is in front of you, then you'll make it!

    Great suggestion to take a family member to Eric's Dr's appt - but I'd go one step further. I'd call the Dr. and explain the situation - (or visit with him in person) Ask him to mention certain things during the appt. - how devastating this illness can be - that not having support from family can have a terrible effect on the sufferer etc.

    Ignorance is often why people act a certain way. I can't imagine a mother not wanting to understand her son's condition and feelings. If she or anyone else acts the same way after being fully educated...well then your relationship will have to be limited to some degree which is so unfortunate. Hopefully they'll all turn around! Don't lose hope on that!

    Don't ever give up on your dreams, your fiance shouldn't either.
    Congratulations on your upcoming wedding and life together!!!

  10. lrning2cope

    lrning2cope New Member

    I totally agree with Janalynn.

    May your wedding be wonderful (and your marriage !)

  11. efaye

    efaye New Member

    girl,you really do have a rough time ahead. You sound as if you have your head on straight.God bless you and Eric and I pray you get out soon and have a blessed marriage.It is very hard to see your loved one hurt I know my dear husband has had a hard time watching me hurt from FM,he's been an angel helping me and working to make a living ,so it can be done.We've been married 42 yrs. and I've been sick quite a bit. We will be thinking about you both and wish you many blessings. Sincerely efaye
  12. MsE

    MsE New Member

    After years of trying to get my family to understand my limitations and periodically thinking I had won the battle just to find that they still didn't get it, I decided to focus on just one of my kids. I chose the oldest daughter because the other kids seem to respect her the most.

    I sat her down one day and told her I needed to have one person in the family who truly understood what ME/CFS was doing to me so that in a time of crisis someone would be able to help intelligently. I talked to her openly and candidly without sounding anything but tutally matter-of-fact. Later I sent her some reading material.

    She accepted this job and she totally "Got it." Evidently she has "educated" the others because I no longer get guff from any of my kids or grandkids. It has been miraculous! I guess it is a matter of choosing the right messenger. At least that's what happened in my situation. I chose the right messenger and then backed off. MsE