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MissyBea

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Hello Everyone,

I have posted here a few times because my mom has fibromyalgia. I have noticed that she gets very, VERY annoyed when I mention to her about someone I know who has been diagnosed with fibro. For example, an acquaintance of mine recently let me know she has fibromyalgia. She was explaining to me that she has pain in her fingers that are associated with fibro. I talk to my mom often so I mentioned what the acquaintance said. Well, my mom was visibly annoyed:-x. She then said she is so sick of hearing about 'everyone' who has fibro now. She explained that she doesn't believe that 'everyone' who claims to have it, has it.

Does anyone understand this way of thinking? I was very surprised by her response. I rarely meet people who have fibromyalgia so Its doesn't feel like 'everyone' has it. My mom has a neighbor (who is a male) who is on disability for fibromyalgia and my mom feels like he is faking it to get the disability checks. I want to be as helpful as possible so I decided I wouldn't bring this topic up with my mother again. I am just curious if others feel the same way my mom did.

Thanks!
Missy Bea
 

jcairns82

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Oct 9, 2013
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82
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02/1993
Country
CA
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Canada
Have you tried asking your Mom why she gets annoyed, when you talk about others? Could it be that she doesn't feel that focus enough attention on her own issues with fibromyalgia?

For myself, I'm always excited to find another person who has been diagnosed with it. In my 20 years with the diagnosis, the only other person is my Mom. This can be a pretty isolating feeling.
 

nascarmike

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06/2013
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I'm baffled by the response but am also not privy to all the details so I wont judge. And besides myself I really have not come across more than a couple of people who deal with fibro.
 

Corvid

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I've come across a lot of people who say they have fibro, and I have felt in myself a reaction similar to what you describe your mom as having. For me, my anger comes from a couple of different things:

1. People who casually say, "Oh, yeah, I've got fibro" when what they really have are the usual aches and pains that everyone gets are like the people who say, "I'm so depressed that my favorite dessert isn't on the menu today." Fibro isn't the normal aches and pains, just like depression isn't minor unhappiness. Fibro and depression are both life-altering, serious, debilitating conditions. I hate it when people throw the terms around casually.

2. When people casually, ignorantly, or falsely say they have fibro or depression when they don't, it trivializes the suffering of those who really do have REAL fibro or depression. At best, it shows the ignorance of the people flippantly using the terms; at worst, it shows their callous indifference and lack of sympathy for those who truly suffer from the disease.

3. When people casually claim to have fibro, but don't, it's like the boy who cried wolf. Society looks at them, sees that they are well and are just being cry-babies, and then when society looks at us, it says, "Oh, those are fakers, too!" We who have fibro know we aren't faking our disease, but it's hard enough to get society to believe our invisible illness is real without these folks crying fibro wolf.

4. My last reason for getting angry is because when I look around my life and see the very many people I've met who say they have fibro, I start doubting myself. They say they have fibro, but are doing activities that I can no longer do. They have energy I don't have. They get much more done in a day than I ever can anymore. So I start wondering, "If they have fibro and can do all that, am I just being a wimp? Am I wallowing in imagined fatigue here in bed, when I could be out volunteering or exercising or doing yard work like I see them doing?"

So, I guess I can see where your mom might be coming from.
 

shattered

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I agree Corvid, well said. I think there are different levels of fibro or severity of it. I hear people say they can travel or work, and I envy them. I remember a few years ago when I had much more of a higher functioning level of this ailment.

And MissyBea, I can feel the frustration of you and your mother. And all I can say, from someone who wishes I had a caring relative like you, is that you should just love her. And ask kindly and gently what she needs. She might feel abandoned, like some of the rest of us, and needs love and nurturing, because there isn't a cure. There isn't a fix. We can't go to the doctor and get a prescription to be healthy. Love is the only answer.
 

1sweed

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Feb 4, 2013
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1,956
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DX FIBRO
Diagnosis
01/1995
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US
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PA
I would agree with Corvid, on all of the responses, but I think number 4 hits home for me the most. The fact that some people who have fibro can do so many things that I am unable to do, it makes me feel like I should push myself harder or do something different. But you know we might only be seeing them on their good days and thus we lack the knowledge of what happens on their bad days.

When we see them partying or speed walking, working in their garden or out and about on the town, then we let our own missgivings about fibro cloud our judgement as in are they faking fibro or are they in denial, or just gritting their teeth and getting their jobs done only to suffer later out of sight of our prying eyes.

Some may be truely faking it in public but the truth comes out in the end. You can only fake an illness for so long before people would catch you in that lie. I know only a few people who have it and some admit it is not real bad and others are bedridden on and off during the year. Sometimes knowing others have it makes our having it feel small and unworthy of the extra attention we might crave for ourselves. Many reasons but it is best not to judge the motives of others who claim to have fibro, without knowing all the facts.

I wish you the best of luck in helping your mom. :)
 

Trellum

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DX FIBRO
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04/2011
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NL
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Your mom could be getting upset maybe because she is actually tired of talking about this disease? I have other health issues right now, and there is one that makes me feel really worried. I HATE it when someone talks about it. My mom and boyfriend know this and this is why they never talk about it, unless I bring it up. My boyfriend is also suffering from this very same issue, sometimes I like to vent a little about it with him... but he gets VERY upset about it. He actually seems to get depressed and that's why I have stopped doing that. Maybe hearing about those people having fibro makes her depressed? Maybe she believes they are fakers, and that makes her feel depressed? I know I would... all those fakers and I'm the one who is actually suffering from chronic pain?! I can understand your mom.
 

MissyBea

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Hi Thank You all for the responses!

I truly appreciate it. I think Corvid summarized it best. I decided after reading your responses that it would be best to just talk to my mom and ask her why it bothers her so much. She said that she hates when Fibro is discussed so casually or someone says it like its as common as the cold. She said that more and more she is hearing about people using Fibro as an excuse to get drugs or an excuse to not work. So, it frustrates her so much because she genuinely struggles with Fibro every single day.

I actually read her a few responses, and she really appreciated knowing that other people understood how she felt. I don't talk about fibro too much, I typically let her bring it up to me but I think in this situation I was excited to have met someone else who had it, so I shared it with her. Thanks you all! Each of you were very helpful.

Thanks!
Missy Bea
 

Witchelli

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Jan 4, 2014
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10/2012
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VA
To tell you the truth Missy, before I was diagnosed with Fibro (among so many other things) I worked for a Neurologist for over 12 years who didn't even believe in the disease and as a result neither did I. That is until I started suffering from it myself. I believe people come from 4 distinct schools of thought when it comes to conditions like Fibro or CFS. One doesn't believe they exist and the folks who claim to have it are just malingerers trying to take the easy way out. The second are the malingerers that claim to have it but don't. The third are those who truly suffer from it, and lastly the fourth are people like me who actually feel guilty about having it. What I mean by that is, since I have been diagnosed I feel as if some people think I use it as an excuse...to not work as much as I used to, to not go places etc. This in turn has made me feel guilty, sometimes doubting myself and thinking maybe if I pushed harder I COULD do more, I could be better.

Maybe your mom is feeling a little of this herself, and it comes out as not wanting to hear of other peoples issues with Fibro because she feels she isn't pushing herself hard enough. Everyone's Fibro symptoms are different and are handled or tolerated differently. I used to think I had such a high tolerance for pain, but when you are deep in it, every day, its gets tiring. So maybe your mom mentally feels she should be pushing herself more but her body is saying otherwise and this manifests itself as not wanting to hear of other peoples claims of Fibro who look like they may be accomplishing so much more than she is. She may just need to understand that everyone who deals with this is an individual and those who say they have it but look to her like fakers, may just have the symptoms to a lesser degree. (Or in fact they may belong to the second group I spoke of and really be malingerers. lol ) Either way she should reach out to others that suffer as she does. I know it helps me to talk to someone who really gets it and has been there.
 

MercyL

Distinguished member
Joined
Apr 30, 2013
Messages
120
Diagnosis
01/1986
Country
US
State
CO
Hello Everyone,

I have posted here a few times because my mom has fibromyalgia. I have noticed that she gets very, VERY annoyed when I mention to her about someone I know who has been diagnosed with fibro. For example, an acquaintance of mine recently let me know she has fibromyalgia. She was explaining to me that she has pain in her fingers that are associated with fibro. I talk to my mom often so I mentioned what the acquaintance said. Well, my mom was visibly annoyed:-x. She then said she is so sick of hearing about 'everyone' who has fibro now. She explained that she doesn't believe that 'everyone' who claims to have it, has it.

Does anyone understand this way of thinking? I was very surprised by her response. I rarely meet people who have fibromyalgia so Its doesn't feel like 'everyone' has it. My mom has a neighbor (who is a male) who is on disability for fibromyalgia and my mom feels like he is faking it to get the disability checks. I want to be as helpful as possible so I decided I wouldn't bring this topic up with my mother again. I am just curious if others feel the same way my mom did.

Thanks!
Missy Bea

I can understand your mother's reaction.

She probably spent years with her pain, trying to get doctors to take her seriously then fighting for adequate pain management, then hearing from people who equate their circumstances with hers but manage their condition with exercise and meditation. It feels like a slap in the face from people who trivialize her circumstances by comparing it to their own.

I have felt the same way when explaining my circumstances to folk who compare their circumstances to my own, then regale me with warnings about addictive pain medications while pushing "natural" remedies and exercise that they found effective. I truly want to tell them they cannot possibly suffer from the same sort of pain if those options have been effective.

People managing their own chronic conditions often do not want to know how others deal with it, they need to focus on their own circumstances and their own options. Your mother's irritation stems from hearing what others say about their experience. Their experience has nothing to do with her own and she may feel that you are pushing her to be like other people using different methods to manage their condition. She may also feel that you compare her to others and do not believe that her situation is any different from theirs.

I often suggest that help should be offered if, and only if, that help is asked for. I have found that most of the suggestions I am given are things I have already tried. When that happens I find myself growing quite irritated as I feel that my intelligence is in question. After all, would I live with my pain for over 20 years without trying alternative treatments?

It sounds like you mother is feeling the same way.
 
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