Nobody believes me

Discussion in 'Fibromyalgia Main Forum' started by shari1677, Mar 4, 2009.

  1. shari1677

    shari1677 New Member

    Okay, title is misleading. My doctors believe that I have FM/CFS. Outside of that, nobody.

    Not my mother.
    Not my father.
    Not my sisters.
    Not my very best friend.
    Not my neighbors.

    I have nobody to really talk to. I've been sick for almost 5 years now and still, nobody believes me. I get the "you're not trying hard enough" speech from most everyone and - people have become angry with me. When I call to vent, I pretty much get "well, if you aren't going to do anything about it, don't complain".

    It is very frustrating and very depressing not having one single soul in person that understands, that I can talk to, who will help me. I feel very alone. I have nobody I can depend on, especially if I should relapse again.

    It is very scary for me and I'm scared for my future. I've even been suicidal from time to time because of how alone I feel with this illness.

    Another example - I had a CPAP titration study the other night. For those of you who are not familiar with this, you have to stay overnight at the hospital to be fitted for a CPAP machine and to have the settings adjusted for you. My family knew about it - NOT ONE OF THEM CALLED TO SEE HOW IT WENT - NOT ONE.

    I'm a 41 YO single mom of a teenage girl.
    [This Message was Edited on 03/04/2009]
  2. BeanyMalone

    BeanyMalone New Member

    I can understand how you feel. I don't tell a lot of people about it because when I did I got the old eye roll. My husband is a nice person but I can tell he doesn't get it, because he'll ask me stuff like "how's your fibrobifida?" and laugh. I haven't told my employers;who knows what they would say. At least you sound like you have found good doctors who know what it is. I went to the dr. a few months ago and when I told him I had fibromyalgia he actually asked me what it was and this was a young guy fresh from med school! They still must not be teaching about it...but you can take solace that at least there are people here who understand how you feel. Maybe venting and sharing stories can help us a little.
    You're not alone in this fishbowl called fibro.
  3. kat0465

    kat0465 New Member

    welcome to the stigma of Fibro/cfs. although some people have understanding family and friends, alot of us don't. that's why websites like this one are so important for us. some days if i didn't have this place to go to, i'd crack up.
    the Hubby is somewhat understanding, but only after a good friend of mine was diagnosed. guess he thought if someone else he knew had it then maybe its for real.
    My daughter has been a lifesaver!! i can tell you this it helps to have at least ONE person you can go to that really gets it.
    i too tend to be closed mouthed about who & what i tell people, it's sadthat after almost 20 years of this crud,and all that i've missed out on,someone would actually thinki'd make it up.

    I'm glad you found us, welcome! you among friends.... that actually understand :){{Hugs}} Kat
  4. spacee

    spacee Member

    I literally have no one also. I have had it 23 years. People have taken my husband aside to tell him that I should "get a little job". Man, they just have no idea. The neighbor's next door asked a man who was working on both our houses if I had any friends. Of all the nerve.

    Stigma is right. But you are among friend here. I have had a lot of suidical thoughts. Your serotonin is probably low. SAMe helped me tremendously. It is pricey. I get it here. At first I had to take 4 spaced out during the day. Now I can take two. That is the 400 mg. My body actually craved it. And if I have a bad thought, I know I need to take one.

    Hugs, Sweetie. Life isn't easy but we have each other here.


    PS that is just a guess about the SAMe but the methylation protocol some people do, RichVK said that SAMe is the major player. It is an essential amino acid...something that our bodied need but don't make.
    [This Message was Edited on 03/04/2009]
  5. tennisnut

    tennisnut New Member

    Do you know - I think you need to come to a place where you no longer need to impress on others how bad you feel most of the time.

    In fact, if possible, try not to talk about it with others. If you get the inevitable question "how are you", either don't answer or say "taking each day at a time". I have felt more validated since I no longer try really hard to let others know how hard it is to live with this rotten disorder.

    People being as they are can't really cope with something they know nothing of, and therefore tend to dismiss the seriousness of our illness - don't buy into that - you know how much you struggle to get through a day, in fact, "soldiering on", as we do, is probably quite destructive. When you rest try to tell yourself to "let go" of your anxiety and other problems, calm yourself by listening to your breathing and clearing your mind - it has worked for me. Most of all don't expect anything from those who don't understand. It doesn't really mean that they don't love or respect you, it just means they can't understand how you struggle. Let them know if you need to go home, stop talking and just do it - finally they will realize you are not "normal". Good luck, TN
  6. wendysj

    wendysj New Member

    Hi Shari1677,

    I am so sorry that the people around you are not supportive. I cannot imagine how hard it is for you. I can say that this message board has really been a life saver for me, and I do have a wonderful support team. I need to talk about my illness and read about other people dealing with this illness. That's what we're all hear for...

    That being said, could you just stop talking to those people about this. Just don't bring it up with them anymore. You can lean on us any time you need to vent or have a question. The only reason I say that is because you do not need the hurt and disappointment that comes from loved ones letting you down. They don't get it... So don't try to make them get it. When they realize you're not talking about it to them anymore, maybe they'll ask themselves why. Hopefully then, they will understand how badly they've hurt you.

    I noticed in your list above that your daughter wasn't on it. Does she understand or at least try to understand. I hope so... My mother and I have a great relationship. I hope you have that with your daughter.

    We'll be here when you need us.
    [This Message was Edited on 03/05/2009]
  7. Janalynn

    Janalynn New Member

    What you need is validation.
    I'm fortunate to have a wonderful supportive family - with that comes the validation that is what we really need. I say that because I have found that this is such a personal illness. One that is very hard for others to understand and comprehend unless they have it.

    I'm not sure I'm able to find the right words to convey what I'm trying to say but I'll give it shot....
    My husband hears how I feel everyday cause he's with me, but I do not tell everyone else because truthfully as wonderful and loving as they are - they ARE going to get tired of it. I mean what do you say to someone day after day when they say "I hurt, I don't feel well". I am very cognisant of that. It's like talking to a person in a wheelchair everyday and everyday you hear "I can't walk", day after day - It's only human nature to want to hear something else or talk about something else. So I am careful in choosing who I "vent" or complain to AND I do it sparingly. They know my life.

    My best friend is the least supportive. Funny actually. She never asks how I am. Never. She stills gets short with me when she wants me to go shopping and I say no. She doesn't get it. So I do not talk about my FM with her at all. No more tears over that.

    The best thing I did was find this board where I realized that I was far from alone. So many people sharing the same physical ailments and even more sharing the same emotions.

    What I would do - and this is only ME. I would tell your family/friends whoever you choose. 'you may not be able to support me the way I would like, but what I need is validation. I NEED to know that you will at least try to understand what I am living with daily and how the lack of family support is breaking my heart."

    What I did - instead of piling a bunch of literature on to everyone was give them tidbits. I would say "oh you should hear what I learned today...and how lucky I am because some people w/FM are..... (bedridden, on disability...)" whatever you choose. I tell them how our pain receptors are different than others - then I always tell them what my Dr. says. Dr.s seem to hold more credibility.

    I have had to fight the " have you tried......" a million times. I have had to tell them that if that was a 'cure', we'd definitely know about it.

    Is there a support group in your area? I would definitely check into that! Ask your Dr./local hospital. You would not only find support but make some new friends as well. I happened to learn of a woman here with Fibro through my sister. We've become email pals and have met a couple of times. It's wonderful to have someone who gets it - personally gets it.

    You are NOT alone Shari. I know that you're hurt. I would be too. Disappointed as well. Stand up for yourself and let them know how you feel - in a very nice calm matter. "even if you don't believe or understand what I am going through, a phone call to see how I am would have meant the world to me". Life is short - let people know how you feel. (without being mean - just from your heart)

    We're all here for each other - to support!!
  8. gapsych

    gapsych New Member

    Shari, I know how hard it is to go through this. We have all been through this and we are here for each other. Your turn to vent now and that is okay as we are only human. At another time you will give support to someone. That is what is so great about this board.

    Janalyn, your post really helped me today. I've been throwing a pity party for myself today. Your advice is always very helpful.

    It is a blessing when you meet a kindred spirit who gets it.

    If nothing else, this has made me a bit more understanding of other peoples situations. If we do not look beyond the surface of how things appear, we may be missing a lot of good information.

    "Judge not......" What a wise saying.

    Take care.
  9. nixon

    nixon New Member

    Are there any FMS support groups in your area? I would check into that, maybe even your doc would have some suggestions!

    I'm glad that you've got a GOOD doc who understands FMS. My doc claims to understand it, but I don't think she really does that much. I was going to a dentist who supposedly was a TMJD specialist, and when I told him that I had FMS, he just blew it off and said FMS doesn't exist!

    I know how frustrating it can be! Hang in there, and you know we are all here for you! Gentle Hugs, Andrea