Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
I posted this in the Lupus forum as well, so I apologize if you see it twice!
Does anyone else here experience a big lack of support from family with being chronically ill? I was diagnosed in December with UCTD (with more of a lupus presentation, from what they're telling me) and Fibromyalgia and told my parents, husband, and close friends. My husband has been incredible, thank goodness, but my parents, particularly my mom, have not been supportive. My mom NEVER asks me about what is happening, how I am feeling, etc. When I mention a doctor's appointment or test result, she does not respond to it and basically acts like she didn't hear me. Today we had a conversation in which she basically told me that she thinks one day I won't have UCTD at all and I will be "cured" and acted like all of this is not a big deal, even though I explained that I spend about 95% of my time right now in pain. After this conversation, I basically came to the understanding (knowing my mom and how she is) that she will not change her mind on this issue or change her ways and that I just need to not discuss it with her anymore.
Anyone have any similar experiences/thoughts/advice?
Does anyone else here experience a big lack of support from family with being chronically ill? I was diagnosed in December with UCTD (with more of a lupus presentation, from what they're telling me) and Fibromyalgia and told my parents, husband, and close friends. My husband has been incredible, thank goodness, but my parents, particularly my mom, have not been supportive. My mom NEVER asks me about what is happening, how I am feeling, etc. When I mention a doctor's appointment or test result, she does not respond to it and basically acts like she didn't hear me. Today we had a conversation in which she basically told me that she thinks one day I won't have UCTD at all and I will be "cured" and acted like all of this is not a big deal, even though I explained that I spend about 95% of my time right now in pain. After this conversation, I basically came to the understanding (knowing my mom and how she is) that she will not change her mind on this issue or change her ways and that I just need to not discuss it with her anymore.
Anyone have any similar experiences/thoughts/advice?
My own father, who was a medical writer, didn't believe in the diagnosis of fibromyalgia because he said, he had read an article in the NY Times (his bible?) that cast great doubts on the diagnosis.
He wasn't a touchy-feely type of guy. However, my mother and my sister, (I guess you could say that they loved me) cared and often asked me how I was doing and listened to me complain about how fibro was impacting my life (loss of ability to work, subsequent divorce, physical limitations and of course, pain pain and fatigue from hell).
I am so sorry about what you're going through. It's probably the hardest psychology part of any illness.
I wish I could offer suggestions or advice, or even say she will come around, but I have been diagnosed for 5 years and my husband and brother have never come around. We just have to be the best person we can be and come here to vent and talk. I hope you don't let it discourage you!
I know it's so hard to not have the support of your mother, but I honestly believe it's because she can't fact the fact that her daughter has this disease and is struggling. She probably wants to be able to fix it for you and knows she can't.
I pray that she will one day come around and be supportive of you. Meantime, enjoy the fact that your husband is being understanding.
I'm sorry that some of you have had to experience this as well. I appreciate knowing that I'm not the only one.