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    Old 07-07-2008, 05:37 PM   #1
    shananava
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    Tired of being treated like I am lazy!

    I suffer from chronic pain due to FMS/CP among many other issues. I do what I can to help people in my life. I still at times get treated that its nothing because i dont work. If i hear all you do it sit on you *** again I am going to really lose it. Pain makes me depressed and I try as hard as I can not to even say anything. It was fine when I had just had surgery in January but now I get treated like that should have fixed it all and no more problems. I had a couple good weeks a month ago and got so excited, then bam , back again. Like I need extra stress of family. I have already had to not tell any info about taking pain meds due to comments from people. Wish people would realize the more crap they give me the more I hurt. I have been reading alot here and really empathize with people. I dont want pity just understanding from people who are supposed to love me. I dont owe anyone any help when I am able just because i am disabled. I never asked to be in this condition and disabled at 34. I am 35 now and had great jobs all my life. I take care of myself and never ask for hardly anything, not ever money. Ill do without first. This is so hard!!!
    Shannon

     
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    Old 07-07-2008, 09:11 PM   #2
    Moonlady
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    Re: Tired of being treated like I am lazy!

    Quote:
    Originally Posted by shananava View Post
    I dont want pity just understanding from people who are supposed to love me.
    I am the same way! When the strange symptoms first started up, I would tell my kids because I thought they would want to know what is going on in their mom's life and with her health. I thought they would be mad if I didn't tell them but after a while I concluded I was wrong.

    Instead they started thinking I was making thinks up... my youngest daughter (16) even said that to my face. She lives with her dad so she is not around me 24/7 to see the agony I have been facing. She hangs around with my oldest daughter (26) and her husband often and I know they have talked about this for my youngest to say it.

    I know that if my mom is facing some health issues I would want to know. So now when I see them, I try not to say much to them. I told them I had an appointment with a neurologist and I stressed to my youngest that the pain was real and she did tell me to let her know what I find out. But I don't feel the understanding or belief with any of them.

    When I try to talk to all of them at the same time in the same place, the subject gets changes every single time... how convenient... so I started talking to them separately, not so easy to distract me then. But I have pretty much given up on that too. I have come to realize they don't want to hear it but it is so hard sometimes because I try so hard to hide it when they are around and sometimes I just can't help but cringe when I get a sharp pain or something and it makes me so mad because they see that. I feel like if they can't accept it then I will keep my mouth shut from now on and not let them in on the new symptoms I have been getting etc. because they will think I am a hypochondriac. At first I thought maybe it was all in my head too... but I know better now. There is no way this pain is all in my head.

    My husband on the other hand, will not hear the end of it. I have forced him to accept it whether he likes it or not. He married me in sickness and health and by golly he is not going to make me feel like I have to hide it from him. He doesn't say much when I talk about it but he hears about any new symptoms I might be having or concerns that I have. Of all people he should be the one I can rely on to stand by me. I really don't feel that he believes me either but I won't shut up with him like I have with my kids. I don't complain constantly around him, I only let him in on new things or concerns so it is not like he hears it 24/7 either. He has a couple of crushed discs in his neck and a torn rotator cuff and I have always stood by his side and sympathized with him and I think I deserve the same in return.

    Sorry this is so long... but I just wanted to let you know that I know how you feel.

    {{{HUGS}}}

     
    Old 07-16-2008, 12:32 AM   #3
    ana33
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    Re: Tired of being treated like I am lazy!

    hi, i know how u feel, every day i wonder why me.
    i have Fibromyalgia. I don't do alot during the day as i can't walk very far and if i do i get very sore feet. I go out with my partner some Saturday nites and love dancing but now since i have had Fibro i can't dance and when i do my feet are very sore.
    My partner is very good and supportive. When i am in pain he helps and he doesn't complain.
    I am not allowed to work and i find that hard. I csn only walk for 20 mins as my feet get sore. I am on the waiting list to go and see someone at the Pain Clinic to see how i can deal with my pain.


    Ana

     
    Old 07-16-2008, 08:06 PM   #4
    seaturtle
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    Re: Tired of being treated like I am lazy!

    Hi,

    Yes, that's hard. Most people don't - cannot - understand, and since we have one of thse "invisible illnesses), they stigamitize us and assume we're lazy or faking.

    I've had a lot of this attitude come my way. One woman, in particular, whenever I see her, she starts a rant about "those people who play the system."

    Accepting our disability and finding ways to be at peace with having them, changing our lives around to accomodate then, living with pain and limitations is a huge job. Lack of support just makes it all a hundred times worse.

    Any support group you can connect with there? Doesn't have to specifically fm, can just be folks with disabilities.

    Sometimes, educating people helps, too. Things on fms to read, explain it.

    All of this so easy to say, so very hard to do, and so emotionally exhausting.

    Keep posting, at least, the understanding is here.

    Seaturtle

     
    Old 07-17-2008, 03:42 PM   #5
    bilij
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    Re: Tired of being treated like I am lazy!

    Hi Shannon, I think most everyone of us feel like you do at one
    time or the other. A year or so ago, someone posted the saddest
    post I've ever read. She said, "first you lose your friends, then you
    lose your family and then you lose yourself." I had not really thought
    about what others were thinking, because I was trying to adjust to the
    "new" me. Believe it or not, it was my long time Christian friends who
    couldn't believe anything was wrong with me because I looked healthy.
    When I gave up long time jobs, they made unkind remarks to me. I for-
    gave them and just did what I could.
    Family gets so tired of hearing about our aches and pains because there
    are so many different places we hurt. (I lost 2 perfect teeth, plus oral
    surgery because of facial nerves affected.) I've always cooked and baked
    for my children and grandchildren, kept a fairly clean house and loved
    working in the garden. With fibro, most of this has stopped. I'm not the
    same person I was at 70. I don't think I've lost their love, but sometimes
    I'm hurting too bad to be the mother and grandmother I once was.
    As for losing myself, I've had to adjust to a new me that feels very limited
    at times. My husband would love to travel, but it hurts to ride for very
    long. Fibromyalgia has robbed me of many things, but my faith in God is
    enough to help me keep this all in perspective. I'll do the best I can and
    that's all I know to do. I pray my friend who were so judgemental in the
    beginning, will never suffer with this disease. Growing old is tough, but
    fibro makes it harder. A fibro friend from Alabama.
    Bilij

     
    Old 07-18-2008, 02:00 AM   #6
    donnag2558
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    Re: Tired of being treated like I am lazy!

    Its so sad but so true. I've been having alot of issues with my hubby trying to get him to get a little understanding of the torture I live, he lives with me, he sees I rarely sleep. My pain is unbearable 100% percent of the time now. I cant take it anymore. I pray the rheum doc i'm going to tomorrow helps. This is the most depressing disease. you cant see it on the outside, but its all inside. Actually I think if someone truly cares enough they should know just by living with you to know youre telling the trurth , no just searching for attention. Compassion love and yes thru sickness and health until we both shall live, and then forevermore in Heaven.....God Help us all...some say this is a invisable disease.... I say open your heart along with your eyes dum dums ... donnag

    Last edited by donnag2558; 07-18-2008 at 02:03 AM.

     
    Old 07-18-2008, 11:40 AM   #7
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    Re: Tired of being treated like I am lazy!

    I just wanted to join in on this thread because I personally think this is the hardest part about dealing with fibro. I didn't work for two years because of this disease. It felt like a lot of friends and family turned against me during that period in my life. I'm in my early twenties so you can imagine how hard it was for my family to believe that I just didn't feel well.

    My boyfriend's family and friends totally turned against me. They told him they couldn't believe he would be with someone who was so lazy and useless. They called me a golddigger ... that I just wanted to use him to support me while I did nothing. It was awful. Now, his friends won't even hang out with HIM they hate me so much ... even though I've gotten diagnosed, on medication and back into the work force.

    The sad thing is, he's slowly pulling away from me as well. He expects me to be okay now that I'm on meds and he doesn't understand that even with meds it's a daily struggle. The pills I'm taking aren't a cure, they just help with the symptoms a little bit.

    Most of my friends are still living the party life. When I tell them that I have to call it a night, or I can't make it because I'm not feeling well ... they think I just don't want to hang out with them. No matter how many times I explain it, they still seem to feel like I'm just putting on.

    It seems like the longer you have fibro, the lonelier you become ...

     
    Old 07-23-2008, 05:31 PM   #8
    badbackpain
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    Wink Re: Tired of being treated like I am lazy!

    I am not twenty but 35 and I have been living with ddd for the past 10 years. When you are first told that it is a "slow progressing disease" you think you have a while to deal with it. Well here I am now at 35 taking 15 pills a day from methadone for pain, hydro, soma, robaxin, restoril, requip,, zonegran, xanax, wellbutrin and several others. My life feels like it revolves around pills and sleep. My husband started out very supportive but it has come on so fast that it is hard for everyone to adapt too. It started where he would tease me about taking an afternoon nap around 2pm every day to being totally upset now that it is everyday I have to take a nap. I have three children who are 14 -8-7 and they stopped taking naps and mommy starts. I hate feeling like I am in another world and when I can't remember something my husband says it is because I am always drugged up. I can't drive a car anymore, or go for a walk with the kids, I have had 5 spine surgeries with the last one being a spinal fusion that did not take at all. I hate to see people go through this at any age. I feel like my life is over before it started. I wear a brace full time I use a walker and in fact fell the other day before I could grab the walker because my right leg has neurological damage to it which is why I can't drive a car and it buckled underneath me and I fell and broke my left arm. I have been trying to get disability for several years and of course was denied because of my age. I had a hearing with a judge last summer and was denied I appealed to the appeals council in Virginia they reviewed the case and found that the judge did error and put it back up again for reconsideration. That was great until I found out that you always go back in front of the same judge. I have an attorney know and another hearing the 30th of July so we will see. My children are suffering the most I believe I am suffereing physically and mentally but they suffer because without my income they can't do the things they should be able to do like baseball and bowling leagues or football extra things in the summer to take their mind of the fact that their mother can't leave the house. With the extra money I could hire someone to take them to those things or at least sign them up instead of them having nothing....
    I totally understand your pain and where you are coming from and how your boyfriends feels and it is horrible to feel that you are getting burnt by bothe ends. You have something you can't control taking over your life and you can't stop it.

     
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    Old 07-31-2008, 02:38 PM   #9
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    Re: Tired of being treated like I am lazy!

    I can't even believe it is me. Somewhere over the course of the past six years I have lost me completely. First I lost my dad to Alzheimer's and then my brother to suicide. As time passed my exhaustion became overwhelming, my body cramps up (legs and hands), I suffer from depression, so many symptoms. When I took the online quiz for lupus I have 12 of 16 symptoms. My GP sent me to a rhumatologist because she thought I may have fibro. I just called the rhumy and was DENIED to be seen. I have insurance, they have my medical charts and I am clueless how or why they would simply not accept me as a patient. I don't have enough energy to even hold down a job but I'm not applying for disability. I just wanted to been seen and talk with a specialist. My brother had psoriatic arthritis and my father had rhumatoid arthristis. I guess I just have a big imagination and I'm lazy. I feel completely hopeless and angry that I've been dismissed without ever walking into the Dr.'s office.

     
    Old 07-31-2008, 03:09 PM   #10
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    Lightbulb Re: Tired of being treated like I am lazy!

    I can certainly relate to you feeling frustrated at non being seen. When we moved to Arizona from Michigan I had already had 4 surgeries with the last one being a spinal fusion and was told to make sure I follow up with a neurologist. I told this to my new family doctor and he tried and gave me a referral for 4 different neurologists. The first one we waited one month and finally got a call that they had looked at my records and the reply the neuro gave was that he didn't feel comfortable because another dr already had his hands in there. The second, third and fourth dr's all said it was too complicated for them that they were not used to dealing with this type of complicated surgeries and would not be able to give me adequate answers and treatments. This whole process took 10 months to find out that they can't find anybody to see me. After a year I changed dr's offices and my dr happened to be chief of staff at a hospital so when she wrote up a referral people listened. However, it was a referral to one of the same dr's who said that they did not feel comfortble treating me. They finally agreed to it and when it was over(my first visit) he read my mri and told me that it looked like ....and read it word for word from the report. I needed someone to make sure that everything was working okay for me after surgery. This dr's here are so bad that it is making me very seriously consider moving to another state. I had my son's dr ask me how to spell a medication once and I realized that this was nuts. I am very sorry about you being denied is there another rheumy you can see? I would call the office and specifically ask to know why you were denied. Is it insurance reasons and if they don't at least explain to them your situation and ask who they refer people too. It could be he isn't accepting new patients at this time so ask if they have anybody they could refer you to?

    I hope everything works out for you and I know about fibro and I hope if that is what you have that you start getting treated for it right away. I also understand about you not feeling this is "your life" my life has changed so much in the last year just my physical symptoms from my disease that I can't imagine back to what I thought was a bad day. I would give anything to have those "bad day's" once again.

     
    Old 08-01-2008, 06:37 AM   #11
    Shays mom
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    Re: Tired of being treated like I am lazy!

    It can't be insurance related because they accept our insurance. My GP is supposed to call me today and I am going to ask for a copy of what was sent to the rhumy. Yesterday when I got the "denied" answer I just fell apart. I lost a dear friend quite recently (cancer) and I think everything just tumbled down on me emotionally. Today I am more focused on getting to the bottom of why I was so dismissed. I realize autoimmune diseases are difficult to diagnois but it shouldn't be a major hurdle to simply have face time with a specialist.
    If I can't get any further with this I guess my only option is to find a better GP (mine has been very marginal but nice) so I have stayed with her. She asks me what I think is wrong and what should she give me for it. If I knew that I would be a Dr. too!
    I'll start going to the gym and do some water exercise and just hope that I can make changes that help my exhaustion and when the flare ups are at their worst I'll just have to go to bed. It is so unfair to be treated like this. I think this is very common, unfortunatly.

     
    Old 08-01-2008, 02:01 PM   #12
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    Thumbs up Re: Tired of being treated like I am lazy!

    Is it possible to let you GP know that the rheum denied seeing you and is there another one she can refer you to. I would hope that there would be more than one that the GP is familiar with. You could try looking up under your insurance to see who is also a rheumy and try calling and asking for a referral to one of the other's in your insurance network. You could even call the rheum office and make sure they are taking new patients. You mentioned that you did not file for disability but tht you have pain very bad. Do you still work? Even so if the pain is so bad and you end up with a "diagnosed' condition you can receive disability benefits. I filed many years ago and was finally approved yesterday for disability with an onset date of 2003. We will then be deciding if we should move to Washington. We live in Arizona and their healthcare system is terrible. I don't know why they say people with arthritis move to Arizona because I have arthritis and it is terrible for it here. I stay in Illinois with my mom for two months and it was not as bad but then came back out here and BOOM pain all over again. This is not the place to live if you have arthritis. There is monsoon season in which it rains for weeks at a time and floods everywhere.

    thank you again for your posting this is where I get a lot of support.

     
    Old 08-02-2008, 11:46 AM   #13
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    Re: Tired of being treated like I am lazy!

    hi shannon. are we taliking about M.E. hear amongst other things. i have been a sufferer for 13 yrs. i look fine and people dont understand that im often in in constant pain especially in the legs and feet.they look at me with a blank sometimes smirk of an expession when i try and explain i cant walk to far and i find it exhausting just to try and change the bed linen. i know the frustation,im told i should get more exercise and get out more.this is from my own family too!i think you are probaly talking about alot worse than this though arnt you? regards..sue

     
    Old 08-04-2008, 09:15 AM   #14
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    Re: Tired of being treated like I am lazy!

    I just wanted to say it doesn't get easier..because people will never understand what they can't see... but you learn to accept their denial of your disease.

    Always try to remember that you can only change yourself and your actions -- I know I try VERY hard everyday to do everything I can. Somedays I can get my house clean, other days... nope - I can live with that. If someone else can't - thats --THEIR-- problem, not mine. You stated you didn't want their pity -- well - pity is better than complete disbelief.

    It took me a while to get where I am to not be depressed by my pain.. to not let it drag my down. Always remember that you have to live with yourself, and your pain and do what you can to be happy and that you can't change others.

    Your NOT lazy - and you know that. Just do the best you can and be happy with yourself.
    -Cindy

     
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