Feel ignored

[Zolly]

Trying to talk to people about Fibromayalgia and feel like nobody cares.. you know when you can just hear how bored someone is when you're talking to them! I've had enough this is my life now I guess I'm gonna talk about it just feel like people could at least pretend to be interested in what I'm saying.. maybe I'm overreacting but annoying me a lot tonight.

 

[moe1959]

Please dont wait for valadation from those who dont care to understand. Hang in there, you have found a soft place to fall with this group.

 

[vickythecat]

I believe most of us here have been at that exact same place. It totally sucks!

I was diagnosed 4 years ago, but ask my mom, she would not know what I have. But ask her what she and her friends suffer from, she will give you the list of 'old age' illnesses. (not that I want to diss those illnesses, but come on, almost all older people have diabetes, high blood pressure, cholesterol etc). It hurts a lot, so you kind of know to suck it up and keep on smiling because staying positive is so important with fibromyalgia.

And yes, this forum helps a lot!

 

[sunkacola]

Hi zolly,
my best advice to you is not to even try to talk to people about it at all. Really, no one wants to hear about it. It isn't that they don't care about you (or, at least, in the case of people who actually do care about you), it is just that the vast majority of people are really only wrapped up in their own world. Most people are pretty self-centered. I don't say that to be mean or insulting to people, I just think it is a fact. It is part of human nature. It takes a certain kind of person to step outside of themselves and really pay attention to the problems someone else is having. And those people are not all that common.

What I do is I don't talk about it at all. If I can't go somewhere or have to cancel I just say I am not feeling well. If they ask me more about it, I say "I have fibromyalgia." and I stop right there. 99% of people never ask me more about it, so I don't say more. If they do, I only give them as much info as they really want to hear. Otherwise you are just wasting your breath and possibly alienating people. If a person doesn't understand what it is like (and mostly no one does unless they have experience with it), they are only going to think you are complaining and no one likes that.

It is rough to have to keep it mostly to yourself. But that is the best course of action in my opinion. Your true friends will stick around and actually be interested. You may lose some "friends", but if you do they were not good friends to begin with.

 

[Lou38]

Hi Zolly. I don't tend to speak to other people about it because mostly they're not interested or at best just don't understand. My mum always takes an interest and asks how I'm doing but no-one else really bothers. I'm glad I found this forum, it's been a godsend some days.

 

[Dom333]

Couldn't have said it better. I learned early on to just say it's my back, or a migraine (which would be true), but anything beyond that is a waste of time in my opinion. People don't want to hear it, and it even bothers the people who do press for more information. "There has to be something you can do about it," is a normal response followed by fifteen minutes of suggested treatments and doctors that you've been through a dozen times.
It's really aggravating and you will learn to just cover it up or keep it to yourself, as crappy as that is.

 

[Peaceandquiet]

Hi Zolly,

I'd like to thank you for bringing up this sensitive topic because it's definitely something I can relate to!
The replies are from caring people who totally understand and that makes this a safe place to talk.
Lately I have learned that there are 'friends' in my life that I must create a new category for....."Those who are not safe to talk to about illness".... Having begun my list , it has clarified for me the wasted energy I have put into these relationships over the years. Yes, it was fun while it lasted but as I come to terms with having fibro I now know we have no spare energy to waste! I agree with minimal explanations when excuses are required....it's less humiliating.

 

[Sagey]

Hi Zolly,

I think that people that have experienced an illness,or are sick like us can relate. They will usually listen and be more compassionate,then others.Because they've been there,they feel the need to listen and give the person time to vent.
Because a lot of times,that's all we need.

Sagey

 

[Nodscene1]

I just wish I had someone to whom I could actually complain to haha. I've never had a lot of friends and now that I've had to move back home with my dad (I'm 45 so you can imagine how much that sucks) I basically have 1 friend left. We've never really talked about my fibro but at least he is understanding when I can't go out because I'm too sore.

I'm also in the same boat as most people in that no one ever asks me how I'm doing. Well, very rarely at most. It would be nice to have someone take an interest and really show concern and want to know how I'm really doing.

Funnily enough, my sister has chronic fatigue and had fm (she is in remission somehow with her fm but still has chronic fatigue) so she has an understanding of what I'm going through to a certain extent. Thing is we dont talk much so my support group is basically nonexistent. Wish I had someone who I could just dump on once in a while and they actually believe how bad things are.

Of course being a guy who was raised old school I tend not to complain or downplay how bad things can get. At most I'll say I'm sore which as you all know doesn't even come close to describing how bad things can get. So I'm sure my situation is partially my fault. I just know though that once you start explaining or complaining people just change the subject or don't want to talk about it.

Sometimes the worst part of fm is the solitude and knowing I'll never have another relationship again. It's a bitter pill to swallow that's for sure.

Ok, that's enough whinging for one night

 

[sunkacola]

Nodscene1, I truly understand what you are saying.

Like you, I am not a complainer at all, and have always seriously downplayed any pain I had, or anything else in my life that was not going well. I have always put on a front of feeling better than I do, whether emotionally or physically.

And I also know what it is like to have no one to talk to. At least you have one friend who seems empathetic.....that's one good thing.
I wonder if you can ask him: "Hey, could I have permission just to vent and complain for ten minutes? I solemnly vow that I will stop after 10 minutes, and you get to respond or not as you choose, and then we go on to something else".

I think most people are sort of scared to listen to others complaints or problems because they are afraid it will turn into a black hole. If you put a time limit on it that might help.

I had one long-distance friend who talked with me on the phone about once a month. She's start the conversation, and would then *****, moan, and complain about her situation (whatever it was, wherever it was, nothing was ever good, only bad, and this went on for three moves to different states and four years). She would carry on for about an hour while I made sympathetic noises (she talked so much it was not possible to get a word in), and then would say good bye without even asking me how I was!

The last time she did this I actually chimed in and made some suggestions, and said maybe it was up to her to make good decisions and try to change her situation. Now she won't talk to me at all.

People are afraid of setting themselves up for that kind of behavior. So if you were to say that you just need to vent, and then when you are done you can talk about other things, maybe that would help.

If I even had one friend I could talk to, I think that is what I would do.

 

[Tipnatee N]

Of course being a guy who was raised old school I tend not to complain or downplay how bad things can get. At most I'll say I'm sore which as you all know doesn't even come close to describing how bad things can get. So I'm sure my situation is partially my fault. I just know though that once you start explaining or complaining people just change the subject or don't want to talk about it.

Sometimes the worst part of fm is the solitude and knowing I'll never have another relationship again. It's a bitter pill to swallow that's for sure.

Ok, that's enough whinging for one night

I can totally relating with that even though I'm not a guy. I think it's my nature to feel like I should tough it out in all the pain and suffering in order to be a normal human being. Growing up I was proud in having a high pain tolerance. And I was looking down upon people who whine about small minor pains . Ironically enough now later on in life I was diagnosed with fibromyalgia, like karma perhaps? That's what I think. So I guess deep down I might have feel the need to accepted that I would been ignored by others. Sorry that bored them if I ever say something unpleasant about it . Being and living quiet is what I try to do. I'm the one that cut them all off because their dramas are hurting me more with my illness. That's how I see it. But you know.. when I finally living alone, laying down alone and almost die alone in one night I was having the crazy high fever temperature of 105 going 106 I was woken up by my own hallucination of an old person with glowing red eyes at the end of my bed saying " you're going die, what are you gonna do about it?" I freaked out and sprung out from my bed fallen on my own feet cause fever was too high to walk straight, took my temperature and couldn't believe my eye ( literally didn't cause I thought I was hallucinating) so I grabed my phone on my night stand then took some pictures of it , so I can see later if it's true. My hand was sweating , My hand was slipping, i slowly dragged my self to the bathroom then crawling in to the tub and turn on the cold shower ( it was excruciating like being cuts by cold icy knife blades over and over) until I felt like my temperature were going down enough I got out to dry my self.. I remembered feeling more control of my body enough to get my self back to bed but I also remembered at that instant of the feeling of being truly scared of being alone for the first time in my life.

 

[Nodscene1]

It's funny you bring up being proud of having a high pain tolerance as I'm right there with you. Not only is my dad really old school as I mentioned but my mom was an ER nurse so unless I was dying no injury was really a concern. I quickly learned to suck things up and just deal with the pain without complaining. I remember a couple instances when I was a teenager where I broke my foot (once I stepped on a football and not only did I tear a ligament but it pulled a peace of bone off my foot....another time I was walking down the stairs and when I stepped off to the side my foot completely folded over causing another sprain and broken bone) and since both instances were in the first hour or so of waking up I just hopped over to the kitchen, made a coffee which I enjoyed for a good hour or two with my mom until I was awake enough to go to the hospital haha.

In a way it taught me to be tougher and fight through things which made me a stronger person. On the flipside, it's really important to listen to your body and be careful not to push too much. I ended up working at my job for a good 3 years or more longer than I should have and I know it really made my health situation worse. I got so bad that I couldn't even work from bed with my sole responsibility of checking for incoming support requests every half hour. I'd literally set my alarm for every 15 min so I could wake up, check the support board and then fall asleep again. My last few months were spent working like this and even that got too be too much and barely made it through it but I promised to give my boss enough time to find someone else to train and take my place.

So while toughing things out can be helpful there is a point when you are doing way more harm than good. It's been over a year now not working and I'm still not fully recovered. Of course I only have myself to blame for that.

Next time you have a fever like that or another health emergency make sure to get help!

 

[Tipnatee N]

Of course I am not gonna put my self at risk like that again , but at that time my mother just passed away from cancer after 5 years of losing the fight and then living in hospice more than just a year , after memorial service I finally back home just to find out that my marriage was over , then between my divorced I ended up in ER twice having to receive paracenthesis cause my ovary was blown up to the size of a soft ball with bloody fluid that need to be drain almost a lb a day for a weak in hospital cause it was crushing organ my liver and kidney ( it was something that has to do with hormone imbalance). After I've got home and my ex finally moved out with his gf . I found my self alone , with all that depression I guess my brain all shut down along with my lack of judgment. I didn't know I was having a serious fever till it was too late. But I do listen to my body while I'm in the right mind seriously. I guess growing up I was a competitive swimmer , I'm used to endured the long hours of training . So I deal with any othe activities the same way as a habit.

 

[sunkacola]

I think it is interesting that many of us are people who have always had a high pain tolerance and who spent our lives toughing it out, no matter what, and going on.

I wonder if that is common with people who suffer from fibro, and chronic fatigue. And auto-immune disorders. I wonder if there is any connection there.......the type of person most likely to develop this kind of thing.

 

[Tipnatee N]

I think it is interesting that many of us are people who have always had a high pain tolerance and who spent our lives toughing it out, no matter what, and going on.

I wonder if that is common with people who suffer from fibro, and chronic fatigue. And auto-immune disorders. I wonder if there is any connection there.......the type of person most likely to develop this kind of thing.

If what you've said is true, then I think you might be on to something on the psychology department. Maybe we prioritize our life on necessity so much so we left our subconscious mind deal with all the unsort small problems overtime like computer overloaded. Now all we feel is pains like alarm kept going all crazy. Our subconscious mind is so far gone we lost the communication.