People think I'm either lazy or crazy

Discussion in 'Fibromyalgia Main Forum' started by AmazAunt, Feb 12, 2007.

  1. AmazAunt

    AmazAunt New Member

    Hi folks. I'm a newbie here

    I've been so ill for so long. Spent the entire summer prety much in bed. I was diagnosed with fibro years ago by an MD I saw for back pain. When I told my primary care doc, he sort of laughed and dropped the subject.

    Since then symptoms have increased and worsened. Ataxia so often that I suffer minor injuries every day due to losing my balance & falling. I can go down all the symptom checklists & I've got most -- TMJ, IBS, sleep disorder, dizziness, cognitive difficulties ("the fog"), pins & needles, thyroid disease, etc. I lost my job because I was too weak and low-functioning to perform my duties (high school teacher).

    I've spent the last year getting tests -- MRIs, CAT scans, ultrasounds, bloodwork, Xrays, sleep study, nerve conduction -- you name it. Not one of the specialists found anything definitive. Now, naturally I'm grateful & relieved that I don't have cancer, Lupus, MS, etc., but the pain and sickness is REAL and really debilitating.

    OK, enough about all that. What is causing me great emotional pain and relationship problems is that many people in my life do not think there's actually anything medically wrong with me. They either give unsolicited and unhelpful advice or imply that I'm primarily mentally ill or just a slacker -- faking or exaggerating how sick I am for some kind of personal gain. Man, that hurts!

    This weekend I had a pain flare-up so severe I wanted to go to the ER, but was too ashamed to ask someone to drive me. I was also convinced that the ER docs wouldn't believe me or dismiss me as just another complaining woman.

    Anyone have any tips on how I can help myself handle the negative or insensitive attitudes of others? How can I take care of myself better to reject the stigma of having a "controversial" condition and seek the help I need? And lastly, what are successful ways of communicating with health care professionals?

    Any support, advice, or validation would be wonderful.

    Thank you all, and accept my best wishes and prayers for your health.

    Peace.


    [This Message was Edited on 02/12/2007]
  2. bewell4

    bewell4 New Member

    For what it's worth..just wanted to say that I have a similar experience. My family's motto is: work hard and don't complain. My sis has fibro, so she understands a little. I have learned not to go to my mom (or other friends or family) for compassion or help. When I forget, and do, (brain fog..makes it hard to remember! really!) then I try to be easy on myself.

    I have one friend with fibro and we talk almost every day. This is the only place I can really be honest about how I feel (SICK! TIRED! etc...).

    Reading "To Wake In Tears" really helped me...even though I know* I am not just lazy or crazy..part of me still can't believe it. Well, anyway...I find myself wanting to rant on and on.

    It is work, and I know how much energy it takes, but I say: find a doctor who believes you and understands.

    Try to practice compassion; for all the friends and family members who can't understand, for yourself for reaching out for understanding. . .and everything. I wish you the best on your journey, and rediscovering your wholeness and health. Take good care of yourself today!

    p.s. i am also concerned about your minor injuries..if i'm totally off, just ignore this, but i wonder if the lazy/crazy attitude is preventing you from protecting yourself. i hope you will be better asap, but in the meantime...where do you get injured? can you switch to plastic dishes or pad your counters or remove sharp furniture...etc...whatever it takes to accommodate this symptom!?! :)

    oh- lastly! trust your instincts. it is a balancing act..trying to get help...that doesn't result in you feeling worse! would the er docs have believed you? find where you can get help and go there to get it. avoid people and places who don't understand or have compassion or any help to give. (i know this is easier said than done...but it is still the ideal i strive for!)

    i guess the other thing i am saying here is...i try to only ask for help from someone who i know will respond with a painful attitude only* when i have the strength emotionally to protect myself. okay, the end! :)
    [This Message was Edited on 02/12/2007]
  3. lookingoutthewindow

    lookingoutthewindow New Member

    I feel your pain and frustration. We all share may of the recurring symptoms. To get peace of mind and a second opinion, I went to a Rhuematologist. He confirmed my GP's diagnosis. I needed this because like you I felt lazy and I was very clumsy and accident prone (still at times). After the specialist confirmed and I had nerve and muscle tests it was somewhat believable to others. Now I just say I have severe arthritis that flares up. It is believeable to most. I still haven't figured a way to explain the lathargic behavior and depression. Just hang in there. I'll be with you.

    Johnna
  4. jole

    jole Member

    from all those nonbelievers!!! We have so much stress in our lives we don't need it from others. There are only two we need to be true to - ourselves and God. If the others chose not to believe, so be it. They can be poison to us, causing more pain and more problems.

    Yes, we need to be compassionate to others, but if they are causing us stress, we need to eliminate them from our lives. This is hard to do, but necessary. Our main concern is to take care of ourselves so we can be here for our loved ones that need us.

    It's very hard to not be concerned about what others think, but with therapy, I am finally getting there. It doesn't matter. We need to be true to ourselves, and if they need someone to gossip about, etc. that's their problem, not ours. In the long run they hurt themselves not us.

    Most of us don't have the time or energy for them anyway, right?

    As far as docs, there are good ones that do believe, you just need to keep looking elsewhere. It takes time and patience, but it will happen for you. Don't settle for less because this is your life we're talking about. Our life is not easy, and we can't let anyone take what little we have left away from us.

    Hang in there - you'll find what you need -
  5. akwildflower

    akwildflower New Member

    I am so sorry that not only do you have an illness that still so few understand, but that you do not have the care and support of your family.

    I have also been labeled as crazy and lazy. It has helped me just to tell people that I have arthritis really bad.

    So far as them saying I'm crazy, I usually laugh and tell them I agree, but that I am still hurting.

    As for the lazy part, I tell them that I work full-time, have up until last month, worked an additional part time job, care for two teenagers, manage a household, AND manage church activities.

    I talked with a lady at the Arthritis Foundation who said that if I did all of this and had fibro, then there was no telling what I'd been doing if I were functioning at 100%.

    One of the cruelest aspects of this illness is that it usually affects very "high functioning" individuals.

    It is easier said than done to not worry about what others think. I have to remind myself of that daily.

    Sending prayers and hugs your way!

    Beth
  6. m5shelly

    m5shelly New Member

    A lot of us here, before we got so bad, were workaholics. Now, most of us have a hard time just getting basic tasks completed. I still work full-time, as an engineer, but have to limit my time to a lot of desk time at specific times of the day/week.
    Maybe we all just wore out our bodies already. I used to work two full-time jobs, and when it was slow at one, I went to college full-time to get my engineering degrees. Following college, I had my engineering job and I was self-employed nearly full time. That lasted a couple of years, then I was diagnosed. Now, like I said, one job is tough. Maybe I wore my body out early in life.

    As for your friends and relatives, just try and educate them on your illness. That is the way I tackled that mountain. I know how you feel about the handicapped parking. I had a tag for awhile after some leg surgeries. The best thing I could do so people wouldn't look at me bad was carry a cane. It helps big time anyway, while shopping and getting errands done.

    Good luck... we're all with ya.
  7. TinaJones

    TinaJones New Member

    First, welcome to the board. Sorry that we all have to be here...but it's a great place to find information, ask questions and get support.

    Oh, I could relate re: all the testing you've had done. Me too - I think I've had just about everything under the sun. Like you said - it IS good that you don't have something terrible. On the other hand, it's sooo frustrating to have test after test after test - and nothing shows YET you are still so sick. Believe me, everyone here KNOWS it is real and just how debilitating it can be.

    I'm sorry that the people in your life don't understand what you are going through. I agree with someone else that posted about printing out information and showing it to them. But, the sad fact is that there are some people that will never "get it". If they haven't experienced what we are going through...they just don't understand.

    It took me a long time to accept this fact with certain people in my life. Basically, though, I just got to the point where I realized that I wasn't going to change them. I KNOW that I'm sick and what I have is real. Luckily, my husband, kids, parents, and close friends understand what I'm going through. BUT I've lost lots of friends who just couldn't understand that I'm not the same person anymore. But I think that just comes with dealing with a chronic illness - there ARE going to be people, unfortunately, that just don't get it.

    The one thing that I really, really want to encourage you to do is find a doctor who understands about this illness. After years of different doctors, I finally have the most awesome team of doctors. It makes the most amazing difference to have doctors that understand, that are willing to try different things and that I can talk to about the effects that this illness has on my life. For your doctor to just laugh and change the subject, is just not acceptable, in my opinion. You deserve to have a doctor that gives you the care that you need.

    I have an internist who is managing my care. He and I see each other once a month and discuss where to go from here. I also have a neurologist and pain doctor. My pain doctor is an anesthesiologist who specializes in pain management. Basically, his role is to manage all of my medications.

    Well, again - welcome to the board. Keep asking specific questions and there are so many here that would be happy to help in anyway that they can. Read different posts and you'll see that many of us can relate to your situation. And really think about trying to find a doctor that understands this illness and will give you the care and treatment that you need and deserve.

    Glad you are here, and look forward to getting to know you.
    --Tina
  8. bewell4

    bewell4 New Member

    tina, i just wanted to follow up to say that your post helped me (i did not start this thread...bonus!)

    i just last week saw my first "fibromyalgia" doc...before that i had had the 'laugh and change the subject' experience.

    i asked him about pain meds (i am going *out of my mind* from the pain) and his response was just, well there is nothing that will work to take away the pain.

    i don't have the energy to fight or educate him, and was thinking of (another big big sigh...having to ask my doc for a referral...ugh, this is a fight too...sigh) finding a pain doc.

    i feel more inspired to do so! thank you

    i also want to try and find a rheumatologist (sp?) who specializes in fibro. the doc i just saw has me on a few drugs, but i really don't feel like that is the whole answer...still searching for quality care. . .

    :)
  9. charlenef

    charlenef New Member

    not my hubby but others talk about me im in bed all the time there was a family gathering yesterday and my mother in law was telling me how she has to stick up for me to the rest of the family on how i live my life im getting better on how i let it roll off my back my mil lives next door so she knows how active i use to be thank god she believes me charlene