How do I get support/understanding from family?

Discussion in 'Fibromyalgia Main Forum' started by TJC, Feb 18, 2006.

  1. TJC

    TJC New Member

    Hi,

    I am new to this message board and also newly diagnosed this week with fibromyalgia. I have been having a whole lot of problems and pain for months now. I don't "want" to have a disease, but in a way I am glad of the diagnosis because at least I know that it is not in my head. My question is how do I make my family, in particular my husband, understand what I am going through?

    For example, last night we were talking on the phone (he works nights) and we got into a huge argument. To explain things as quickly as possible, during the week I am like a single mom to our 3 children because he is a truck driver. I take care of everything around the house and that the kids do. I also work 20 hours a week and go to college. Six months ago we bought a new house and moved....of which I did the packing and getting ready and moved quite a bunch of boxes myself. We also kept our old house and are trying to fix it up to rent. Needless to say, paying two mortages for longer than we had wanted, our money is tight right now.

    Again, to shorten things, our fight was basically that I don't work enough, that he is ticked off because I haven't been doing more with getting the other house ready to rent, that I don't do anything, and that maybe I ought to just drop out of school (I am working on my dream of being a nurse) and get a full-time job because at least the money will contribute more to the family than what I am contributing now! Then, as I tried to point out all that I do that he never sees because he is not here during the week and how it is causing me pain with my FM, he says to me...."Oh that's pretty crappy. So now you are a cripple and can't do anything?" I have never done this before, but I had to hang up on him. I was so mad and hurt that it just would not have been nice to say anything else.

    I know that it sounds like he is awful, but he really isn't. He has always been a supportive man. We have been together 13 years and married for 9 of them. I love him to death and I know he loves me, but I just cannot express how much he just hurt me. I don't know if it is because he doesn't know how to deal with the fact that I am sick or if he is just yet another person that doesn't really think that FM is real and that it is in my head.

    I didn't know where else to go and I found this board. I am hoping that some of you maybe have ideas on how I can better explain this disease, not only to my husband, but to other family members as well.

    Thanks for everything!
  2. sarahann61

    sarahann61 New Member

    It is hard to get anyone to understand , even the Dr's, sometimes..... Most men , if they can't see it, then it doesn't exist... My DH has came a long ways , but he still doesn't get it.. Because some days ,I can do so much more, than other ..

    If you can get him to read about it, there are several books.. My DH doesn't like to read, especially anything very long. I have printed the letter to , loved ones, with family ,with FMS, The Spoon Theory, and etc...

    There is a lot here on this board, and you have come to a good place, to get help... But, I think you will always have a problem with some, or at least one of your family members, or friends.

    My sister is a RN, she is still working, and I am not.. In her mind, she is just tougher than I am.. I think if she knew ,what I did go through ,when I worked , she could understand, and have more respect for me.......
  3. Hope4Sofia

    Hope4Sofia New Member

    First, I'm so sorry for your diagnosis. This is a hard dd to live with. I've lived with it for about 15 years but was just diagnosed last month.

    A lot of people don't know what this is (or believe it's real). That makes it even more difficult for us.

    I have a wonderful husband but even he has had some insensitive moments. He's definitely coming around but part of that is due to him learning more. It helped a lot that I went to a second doc to get another opinion and that doc strongly agreed with the diagnosis. It validated the illness in my hubs eyes.

    It has also helped that I bought several books and magazines on the subject and left them around the house. (Though, don't fantacise that he will read everything and show huge amounts of concern). I am learning that this is a gradual process.

    I also have been going to a great therapist who has been helping me process all the emotion of this dd. It really is a grief process. I think the therapist is important because it's a safe place for me to get it out and she has given me some compassion for my hub.

    He can not understand what you are experiencing. And you need more support from those who can. This board helps a lot. A support group would also be good.

    I think we have to give them time. I know we are going through a very painful thing but we can't forget what this puts on them as well.

    I am looking for ways to make my life easier so he doesn't have to overcompensate (right now, I need him to). I'd like to hire a mother's helper or personal assist at some point but don't have the cash yet. that may be something you can do once the other house is off your back. (we actually have that same 2-house issue.)

    The other issue is your schooling. This I understand. I have been accepted into a graduate psychology program but have decided to postpone just for a short while. The important thing here is to get to a more managed way of living with this dd. I think everyone's life would be easier if we weren't so miserable. I believe it is possible.

    I am making changes. I've changed my diet, the clothes I'm wearing, and my schedule. I'm going to therapy and treatments for my back pain. Once the pain is down a bit I will start trying to incorporate a low-impact exercise program. Baby steps at a time. I've read posts by people like Stormyskye that give me hope. My doc also gives me a lot of hope for "better" living.

    I'm still planning to get that degree but I just have to accept what's humanly possible at one time. You may want to think about it. I certainly wouldn't give up your dream just maybe tweek it a litte. The career itself can be very strenous. My B.S. degree is in Dietetics and that work got very tiring - what the nurses did would have done me in.

    Anyway, all this to say. I believe it will get better. We are here for you. You will need us. I hope my words are helpful and not discouraging.

    Tc,
    Sofia
    [This Message was Edited on 02/18/2006]
  4. Mary100

    Mary100 New Member

    It takes time and it is hard because he is not there to see how you feel.

    You might check the library to see if they have any fibro books on tape/cd that he could listen to on the road. Just tell him how important it is to you and to please try and understand.

    Have you found a good dr yet? Has he gone to an appt. with you yet? I found this very helpful.

    Just rember that you only have a certain amount of energy each day. What you do with it is your choice. Learning how to manage that enery properly is the key, i believe. I think that even on a good day, you still have the same limmited amount of energy as a bad day, so don't overdo it, you will pay the next few days.

    and yes, people will think you are lazy, but you just have to get used to it. Remember, not all disabilities are on the outside.

    You might check into trying to get some gov't help. It isn't easy, i'm still trying.

    And remember, the dishes, laundry and dirty floors will be there tomorrow. But your children and husband need you today.

    Also, it is amazing what children can do around the house to help "mommy". Even putting their own clothes away is a big help and it makes them feel like a "big girl". So what if they get the pants in the wrong drawer. Things aren't going to be perfet anymore (if they ever were).

    You always have to think, what would make this job easier and lighter to do. There are many products out there that can help, and yes they do cost money. I put them on my birthday and Christmas lists. Sounds strange to get a disposable toilet bowl brush for your birthday, but what every works, right?

    I will stop rambling.

    Good luck with hubby. Just do your best.
    ps, I took my hubby to therapy with me once, and he didn't like all the things I complained that I didn't get done. I don't tell him anymore what I do and don't do and things are much better. Just try to keep the dishes done and see how much better it will be. There seems to be something about a clean kitchen sink that means you have cleaned house or something.
    Anyway, thats what I concentrated on first.

    Mary
  5. Hope4Sofia

    Hope4Sofia New Member

    I loved the bit about the dishes. That is so true. If my sink is clean I feel I have accomplished a lot.

    I also think you're right about the complaining to hub about what i did or didn't do. I think he takes it on himself as if I'm blaming him or something.

    Tc
    sofi
  6. Jgavi

    Jgavi New Member

    Love and marriage is UNCONDITIONAL love and UNDERSTANDING....most people be it friends or family will not understand our disease/disorder unless they take it upon themselves to EDUCATE what FIBRO and CFS is! He is lucky you can still do what your doing!
    I wish I could move and do what your doing! Your still moving very well!

    Take him to several support groups if he wont read up on it...I lost the majority of my family and friends because they are narrow minded, selfish. They cant believe someone can have 24/7 chronic pain....you will learn quickly what people are really made of, family, friends or the health professionals...nobody can predict who will be there for you...at least this web site is one place you can count on...

    He may be a good guy but added stress will only make your worse, make sure he knows this...he has to understand what you have and what makes it worse.


    ..maybe after some words of wisdom he may wake up...take him with you to the doctors..let the doctor tell him. You need to stop feeling bad because this isn't your fault...he is going through a selfish phase....I only hope you know he may not come around, good guy or not.
    I had many good people leave me fast!

    As a man I know what most of these guys think and it isn't understanding and willing to bend especially after years of little changes, this is a big change and men hate big changes!

    KNOWLEDGE IS POWER and we all are still learning what this Disease/Disorder is all about...getting into arguments isn't helping, that energy should be used to help you, not to use you as a punching bag. He is wrong but again its early.

    I wish you the best but always have a back up plan in the back of your head....

    Jgavi
  7. lurkernomore

    lurkernomore New Member

    I am so sorry to read that your husband is being so insensitive right now. Everything everyone here has suggested to you is great. I know that having my husband go with me to see my rheumy was a big breakthrough for our whole family.

    Having said that, I also have to tell you that there will be times in the future when you will simply have to remind them that fibro is chronic, it does not go away and neither do it's problems.

    Just last night, for instance, a movie was being advertised on televison that is supposed to on next week. I commented that I really wanted to see it. Welllll, my normally supportive husband looked at me as if I had sprouted a tail and informed me that "we DID see that, at the movies and he couldn't believe I had forgotten it." Ummmm, okay, I just shut up, but that crack really bugged me.

    So after stewing on it all night and this morning I had a heart to heart with DH and told him how hurtful I find it when I say I do not recall something and he argues with me or acts as if he does not believe me. And it is, because what do I stand to gain, other than looking like a ninny, by not remembering so very many things?

    So if your hubby is open to it, please educate him as best you can. And don't be shocked if some of what you have shared with him has to be repeated. Sometimes it is frustrating, sometimes it is infuriating and when angry, just try to take a bit and cool off and approach it with a cooler head. Good luck hon, this is a long road and there are no "one size fits all" answers. Just remember that we all understand here and come back and post and vent as you need to.
  8. caroleye

    caroleye New Member

    My mother I divorced for her extreme insensitivity.

    My daughter I rarely correspond with for the same reason.

    My husband was given the choice of therapy or the highway.

    Therapy is working!!

    Just can't handle any stress from insensitive people.

    LIGHT*********carole
  9. cynny3

    cynny3 New Member

    My husband literally took years to have an emphathetic bone in his body. What finally helped - time, and me realizing that along with my diagnosis of FM, also came the job of getting those around me to accept and understand it.

    I think the thing that helped the most was making him drive me to the doctor. The brain fog makes it hard for me to drive to new places. He loves to drive, so asking him to take me stroked his ego.

    Sitting in the doctor's office with me really was what finally got him to see that I was not making this up. I think this was really the turning point.

    After that, he started to talk to me differently. And I started to talk to him about it all differently too.

    Making fun of myself, making him feel like he's got to "take the lead now" and all the things that helped stroke his ego and give him a "role" in all this has really helped his acceptance.

    At the same time, I got him to go to my massage therapist. She herself has fibromyalgia and is in remission. I secretly asked her to please help him understand what FM is like to live with.

    Since it was a relaxing time for him getting a massage, he was more open to listening to her about FM.

    When he came home, he didn't talk for awhile, but it was obvious the reality of my condition was slowly but surely sinking in.

    In summary, it's going to take effort on your part (like you need another job!) to help your husband be educated about FM, learn to accept FM, and figure out what his role is in this. His anger right now might really just be fear, and he needs time and information to get over his fear.

    With young children the best thing you can do for them is to give them a positive example of how mommy and daddy worked through adversity as a team and really took their marriage vows to heart "through sickness and health..."

    Good luck and best wishes,

    Cynny3

    P.S. good luck with your rental property. I also began investment properties when I started getting sick and thank god I did! I don't know where we would be today financially if I hadn't struggled to keep all the properties afloat.





    [This Message was Edited on 02/18/2006]
  10. TJC

    TJC New Member

    I just want to say thank you to everyone that responded with ideas about my husband. I really appreciate it. I have spent most of the day upset about all of this, but I think that most of you are right in that it is just his way of dealing with it. It has affected him as well, and will continue to, and I am sure that is a big thing for him to process.....just as it has been for me. I like the ideas of taking him with me to the doctor's office. I don't know if I can schedule them with his work so that he can, but I do know that I have to take him with me for my first few physical therapy sessions. They said that the first few times they would like me to make sure I have a driver just in case I am not feeling well, as well as they are going to teach him some massage techniques. Maybe that will help him to understand a bit better.

    I am so glad that I posted and thankful for this place. I already feel like I have support when I need it.

    THANK YOU EVERYONE!