People that dont understand...what to say?

Discussion in 'Fibromyalgia Main Forum' started by Luxuria, Oct 8, 2006.

  1. Luxuria

    Luxuria New Member

    Hi all

    I have been fortunate that a lot of my family and friends are sympathetic and understand how I am feeling and if they dont they make all the effort they can to ask questions and learn. It makes me very happy.

    Then there are thoes that just don't get it. I'm sure we have all encountered them.

    My biggest problem: my mother in-law and really my whole in-law family. Even my husband sometimes. He is the better of the lot though, he tried to help and gain insight most of the time.

    My mother in-law though will ask me a million questions, the same ones, over and over and over. What I tell her just doesn't sink in and a lot of the time it seems like she doesn't believe me. She is thinks that I can just "take a pill" and be better, she has even gone as far to say that if I exercised more this wouldn't happen, like it is MY fault. She is not only like this over my TMJ & Fibro but almost everything.

    Today I was supposed to go with my husband for thanksgiving dinner with his family at his aunt & uncle's house. I had a bad flare up last night and am in way too much pain to go. He said that was fine but I know the in-laws are going to have an issue with it. For the last year every time I can go somewhere with them they take it as I don't like them which is not true. I told my husband that I WANT to go but I CANT go, I have to do what is right for me. Going was not the right choice for me.

    So how do I explain this so they understand? The last few months I just gave up explaining and accepted the fact that they dont get it and never will. It is very frustrating though and I hate it.

    Any advice?

    Bekah

  2. Adl123

    Adl123 New Member

    It's unfortunate, but some people just don't get it, and won't, until they are ill.

    My family takes it personally, too, especially as I have some cousins who have CFS/Fibro, and are still well enough to go to family functions. It's' gotten to the point that there are only 2 people who ever contact me in any way.

    In a way I'm lucky, because I have a lot of other illness, too. I've gotten to the point that all I tell peole is that I have a bone marrow infection, or that I have Rheumatoid Arthritis, (Both of which I have) and that I can't do such and such. Those things they seem to understand. However, from what you say, it sounds like your mother in law doesn't.

    I'm really sorry. You just might need to give up thinking about what they say, and stop explaining. I think that explaining over and over only puts them in control, and makes them think it is alright to judge, so they keep on looking for a loophole. I know it's hard, but I would suggest that you not say anything.

    When she keeps on questioning you,just say something like: "It's just the same", or "nothing has changed". Maybe then she will get the point and just accept you. I'm not as nice as you are. I would pick up my plate and move to another part of the room. She is lucky you are so patient with her.

    Good luck. You're not alone in this battle. We are all with you.

    Hugs,
    Terry
  3. NyroFan

    NyroFan New Member

    Bekah:

    I would just write them off. If they can not understand an explanation it is their denial.

    Carefully let people know of your condition. Hopefully your husband will understand and accept your situation.

    I would tread carefully and not get upset about it.

    People are people and some are just plain ignorant.


    nyrofan
  4. Aberlaine

    Aberlaine Member

    I was going to post the "Letter to Normals", but you beat me to it, Nancy.

    Here's the website, if you want to bookmark it: http://fmscommunity.org/lettertonormals.htm

    And here's another thing we've used for "normals" who just don't get it: http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php. You can actually use your MIL's spoons, if that will help.

    Doesn't your husband back you up? Can he say something to his mom?

    And, as a last resort, if someone doesn't want to believe that you're sick, cut them out of your life. Of course it's harder if they're your relatives.

    Good luck, Bekah.

    Gentle hugs,
    Nancy
  5. kimkane

    kimkane New Member

    I belive "The Spoon Thery" is on here.

    Do a search. It explains it very simply.

    But even then if they don't get it..don't sweat the small stuff. As long as your hubby understands and helps you thats all that matters.

    Years ago I had to get rid of everything toxic, that included people. They are just to stressful. Stress is our worst enemy.

    You have to put you 1st. Sending positive energy your way.

    KIm
  6. maedaze

    maedaze New Member

    Use the arthritis word, most older people have never heard of fibromyalgia and are not comfortable with new words.

    But if you tell them you have arthritis (fibro is one of the many many arthritis's) you usually get some recognition out of them and also the understanding that it's on going etc.

    My inlaws were the same until I explained fibro was arthritis in the soft tissue and muscels. They were still not interested enough to find out more about it etc. But they are more understanding if i don't make it to gatherings and they have got off our 'backs' so to speak.

    They were on at my husband to 'put me away' as they thought I had mental conditions.. They probably still do!!
    But the arthritis word seemed to have shut them up and that it came from a rhemetologist.. you know a REAL doctor!! Yes some people just have smaller minds. Do what you can and then move on. Stress is always a trigger in fibro and cfs and they are not worth a flare.

    Good luck :eek:)
  7. Luxuria

    Luxuria New Member

    Thanks everyone for your kind replies.

    My husband tries his best to understand but sometimes still doesn't quite catch on. I know it is hard for him because I am different now than I was 4 years ago when we started dating. I think he needs time to adjust.

    At times I really wish I could just cut them off completely, but family is very important to my husband and he would be hurt if I did and I dont want to do that to him.

    In a way I am lucky because the people that dont want to understand or be supportive I wasn't very close to to begin with so I dont really miss them. My mom has had rheumatoid arthritis for 12 years or so so my family understands. My aunt has fibro and I have been close with her my whole life, her son has rheumatoid and is 28. He has been one of my best friends my whole life and still is. So in that way I am lucky and blessed to have them around. My 2 best girl friends, one I have known since grade 5 and she lives in California now but still writes and calls all the time to see how I am. My closest friend calls me everyday, she did before I was diagnosed and still continues to do so. She comes over just because and she has shown up many times with food and made me dinner just because she wants to. I guess I should be focusing on all these good things and not the few people who tick me off.

    My husband doesnt really know how to explain how I feel to his family and often just says "She doesn't feel well" so to them it looks like I am making it up just so I dont have to go.

    My mother in-law doesn't understand my condition, she doesn't get my mom's condition and often asks me why she doesn't go out much. Even little things that you would think would be very simple to understand she doesn't get.

    For example, I can't drink wine because it gives me horrible headaches. Every time I am at her house she asks me if I want wine 2, 3, 4 times or more. She has been doing this for FOUR YEARS. I dont get what is so hard about that. I drink beer, I drink cocktails, I dont drink wine.

    I know she has good intentions, such as I am allergic to pork and she is Filipino so normally she would make a lot of food with pork but she makes sure not to when we are there to eat. Most often though she will make 6 or 8 dishes (or more!!) some with and some without. So I KNOW she does mean well just some things she can't grasp and it is really frustrating.

    I think because it took a year to find out what all this pain is and we are still learning on how to help me feel better that it is a really confusing time for both hubby and myself. Hopefully over time we will find new ways to cope and manage. I am still in the very beginning stages of all this and I know I need time to learn and grow.

    I guess the best thing to do is accept it and move on.

    Bekah
    [This Message was Edited on 10/08/2006]
  8. Luxuria

    Luxuria New Member

    Thank you Nancy :)

    I really do know thay my hubby's family means well, they just need to form a better understanding.

    I enjoy their christmas functions much better than these smaller gatherings. When his mom's side of the family gets together it is pretty funny. A good 30 Filippino people in one house and then there is Joe's dad and myself, the only two white people. Pretty funny. Joe's cousins and his sisters are all around our age give or take a few years and are really nice people. It is easier to relax when there are more people there to chat with. A few cocktails never hurt either ;) haha.

    I am looking forward to tomorrow. Kathleen, my best friend, is coming to visit. She is spending this year a little over an hour away in Toronto at teachers college so I miss her a lot. We used to see each other 4 and 5 times a week sometimes and now it is like once or twice a month. We are spending this weekend in Toronto to visit her as well. Hopefully if I rest enough this week I will feel good to venture out and have a fun time.

    Bekah
  9. wkirk87

    wkirk87 New Member

    Just think of anyone (or say to your hubby) you're mad at or don't like as a "poophead"!

    Trust me - it'll bring a smile to your face because you'll think, "How could I think/say such a stupid, childish thing?"

    It actually works! I'm not kidding!

    I was skeptical at first when I was told that by someone about 8 months ago, but I tried it and it works!

    Otherwise, I agree with what the other people have said, but have one more thing to add:

    Always try saying Fibro Myalgia before Arthritis. Only after they fail to grasp Fibro Myalgia, use Arthritis. We want to get the word out on this DD, y'know. ;)

    Good luck!!
  10. Luxuria

    Luxuria New Member

    Just seeing you print that made me laugh!

    Bekah
  11. rockgor

    rockgor Well-Known Member

  12. happycanuk

    happycanuk New Member

    I have OA as well as FM. Most people where I live know what FM is (western Canada). Here it is also under the umberella of Arthritis. I don't go into long explanations as it really doesn't matter to me whether they get it or not. It is certainly hard for people who don't have chronic pain, to associate anything with it. Hopefully they never will.

    My grandmother lived with us as I was growing up, and I saw her in pain every single day. This was 50 years ago, when I was a kid. No pain meds much to help her out. She used Absorbine Jr. and took Asprin. She was a strong woman and I really didn't hear her complain much. She also had Perth's Disease, and wore a built up shoe and walked with 2 canes all her life. When she was 74, she had a hip replacement (I was 12 at the time) and then walked for the next 22 years of her life, with crutches, still in pain. I believe, along with OA she also had FM.

    Sorr to write a novel. Just tell them you have Arthritis. Everybody knows that is an uncurable and painful disease.