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A Little More about Family/Others Opinions..
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missist posted:
I know I'm slow to learn. Here I am in my mid 50s and I guess it is finally dawning on me that I LET people treat me crappy and its really up to ME to stop them.

I think now-- Fibromyalgia is not caused necessarily by the stress in your life but I think it is definitely made worse by it--flare wise I think I can say clearly that for many years I could count on flaring up over every holiday or family event like clockwork. I realize now it is not all the fault of those folks I was spending time with-- but rather a lot more MY fault for not allowing myself to take care of myself and for not stopping folks from running over me.

So--I guess I would like to say to younger women who are struggling with relationships with people who run over you or disrespect you--stand up now so you won't be in the soup later. Get counseling if you need it or just do it on your own--feel free to ask questions, be open, discuss it etc...

Fibromyalgia is a controversial diagnosis. Sometimes it can be better NOT to know this is your problem. There are families with issues in which this is like the WORST thing that could happen--for you to have something invisible and that has not always been respected in medical circles much less in the world.

You need to be tough to take care of yourself and not let people make you worse.

I'm starting this thread to talk about this--cuz I need to and I know there are some new folks lately who do too.

Yesterday I saw the pattern in my life. I have some folks in my life (many) who are very opinionated personalities. I noticed there is a pattern of me saying something. Person X negating it and being hurtful in the process--saying something demeaning about me--about my intelligence or past etc, then I will call that demeaning comment to the persons attention and right away be accused of making a fuss again, or being too dramatic or 'ruining' a good time. LOL.

so-- I called it out and said you need to stop and think how YOU would feel if I said that to you. Over a few protests I did get that person to see how demeaning what they had said was.

BUT I realized this process is many many years old. I am sure fibromyalgia has a part in it-- as in I have been considered to be lazy and neurotic for so many years now by most of those in my family--that I'm overwhelmed at the job of demanding respect from them.

However it is my 'job' right now--I feel I MUST deal with this now even if it means the end to some relationships --although I hope not--I can't be a shadow of myself anymore, there just aren't that many years left.

So anyhow--I want to say this--Take note of the patterns in your life--if there are people who are making you feel like less a person-- work on changing this.

I'm praying about it and thinking about and acting on it. There is nothing worse than feeling like less of a person partly because you have an illness that is difficult to deal with. I will say though--I think the fibro only brings out the truth on this matter-- I don't think it causes people to disrespect me--it only shows me what is going on--and always was. I knew it--I just didn't know what to do about it. I also have always bought into an idea that I 'must' be nice. Nice is not always a good idea, took me way too long to learn that.
Mary
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missist responded:
Maybe not quite a 'little' more.
I'm sure not knowing each other personally folks don't know what all I'm talking about. I think though so many come here who say "how do I get my husband/family, etc to support me"

Well for me--this is square ONE. Get them to respect you.

Mary
 
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An_249675 responded:
Stress absolutely has an effect on Fibro. Some will say that it's the CAUSE. I am having marital problems recently mostly because my husband is not supportive whatsoever. I went to marriage counselling in order to talk to someone about his anger issues and emotional and mental abuse. I was told that my body is so acutely stressed from living with this for so many years that it made perfect sense for me to feel the way I do. She said I would feel better when the source of the stress is taken away. A lot of it anyway. What does that mean? When my husband is taken away? (ha ha) He won't go with me, he never helps in the least. It may be time to think of parting ways although I am almost 60 and I think it will be very difficult. You may have to drop the people who don't believe, don't care, scoff or insult. What's the point of putting up with that? It's already a hard road.
Wishing you the best.
 
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missist replied to An_249675's response:
Hi.. just thinking at 50, 60 ending a marriage over stress caused by other person's anger issues etc.. that's not so easy is it? I am looking at different ideas about how to not be a sucker for a bully. It really does seem --in my life--that somehow I invite verbal bullying. Nobody is physically harming me--thank God--if they were relationship over ASAP. Hope it is the same with you. I just put up with a lot of negative demeaning talk--not maybe as far as 'abuse' really. I have to admit--in exchange I probably put out too much in the way of whining. (cuz something always hurts..)

So I'm thinking there are ways we act that make us targets for people who seem to thrive on being nasty maybe. They get something out of it. What do they get? a little drama maybe or or some kind of superior feeling?

How to handle that is my first thought--not so much 'removing' people from my life--but rather changing the dynamics of conversations etc.. So I'm looking at patterns to see what keeps happening and how can I make it different?
 
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missist replied to missist's response:
An_24... Of course--here's the rub, we all have different issues that are causing us stress. For me I think I'm a little 'too nice' and accomodating; but also too 'thin skinned'. And so its kind of like wearing a bulls eye around the folks in my family. (hubby included) I am not sure they are actually aware of all the issues.

so for me its like-- do you realize you just said like 3 or 4 demeaning things in a row? I think we need to improve our conversations.

Anyhow I"m studying this issue. I guess for me to separate from folks is a last ditch-- after I make darn sure I can't fix things some other way-- now--maybe you cannot--and maybe I cannot.. dunno. We shall see...
 
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Anon_10089 replied to missist's response:
Hello-

This is a good discussion because while I think there is a huge issue in how people with FM are treated, I do think we can have some control over it too.

My husband is pretty supportive, in that he believes in FM and believes that I am in pain. However, where I (often) need a listening ear, I don't think we wants to be that. It helps me to be able to for just a minute or two, say how I feel that day--headache, didn't sleep well, lower back, etc. Saying it out loud helps me. It's like I can tell someone and then move on with my day. Often I am kind of fascinated by how my body can be going wrong in a new way! I am able to distinguish that on many days, even though I am in physical pain, I am ok mentally. My husband, though, cannot and takes this as though I am miserable all the time. Honestly, I can't blame him for feeling that way. My goal is to talk about my pain less to him.

There have been times where I have felt intuitively that my husband doesn't have much respect for me and he's made comments to the effect of me not having my own life, etc. Finally, I had a realization and I told him that I think he would respect me profoundly if he knew how much pain and fatigue I put up with while leading a pretty normal life! And that goes for everyone. Plus, some of our issues don't have to do with the FM, or are related, but probably would have been there anyway. I think that's important to realize too when we face marital/family problems.

My newest line is to tell someone to imagine how irritable a person would be if they had just a tag poking them all day in their shirt. They would be grumpy, snappish, and I bet barely able to handle much stress. Think of what we deal with! It's a miracle that we function at all! People should respect us.

I am also "too nice" but "too thin skinned". I kind of made a conscious decision as a young adult not to be a "witchy" (with a B, no other word) wife or woman, in general. But it seems like women like that don't get walked on and get what they want. I guess there's a balance to be struck, but I haven't found it yet.

As far as FM in general and the public's view of it, I don't care. I don't even care if that's my diagnosis. All I know is that I have chronic pain and insomnia and have since childhood. I also have migraines often. I am confident in that--there is no denying it!! And I am confident that I have done more reading and research that anyone who doesn't have it, including most doctors, except maybe a researcher. If someone wants to give me crap about it, go ahead.

Mary, I am sorry for the situation you are in. If I had family that wasn't as nice as mine, I'd probably be in a similar situation. From what you write, I think we have similar personalities. Part of my problem too, is that I don't think quickly on my feet, so I have a hard time responding on the spot. Maybe even if things don't change too much, just knowing in your own head what's going on will make it easier. FM does give us incredible empathy and now when I interact with people that do not have much empathy, I think to myself that someday life will deal them something that will make them understand. And they will need and hope for people to understand their problems!

Thanks for this discussion!
--JR
 
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missist replied to missist's response:
An... I think I'm going to call the folks in my family 'challenging' rather than bullying or abusive. Its so important when you have 'challenging' follks in the family--or as spouse-- that you learn to not be thin skinned--so I'm working on that. think that's where a lot of my personal stress is from--but also from needing to make more of my own decisions. so I'm working on that too.

We should talk about things though--and I think family/marriage stress is a HUGE stressor that causes fibro issues so its a good topic.
 
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ajnsmom replied to missist's response:
Hi Mary, This is a great topic! I can't type much right now, but I look forward to hearing more responses on this.


Linda S. (Jax, FL)
 
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missist replied to ajnsmom's response:
JR--- What you said about not thinking quickly on your feet-- so true for me too. I have tried to even make myself remember little tips to use when I dont know what to say--of course the problem with trying to change yourself when you have fibro is you cannot remember what you were going to do or say!! LOL. I often think of what to say after the fact--too late. But I"m not sure it would have had the effect I wanted anyhow.

Ajnsmom-- can't wait for you to chime in and others.

I am workin so hard too at not letting my memory and fog being an 'excuse' but that's hard cuz they do make a difference in my life. Plus my seizure disorder and the meds for that have made it harder to think and remember.
 
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missist replied to missist's response:
JR--- Been re-reading your post. There are so many things we have in common--that 'decision' not to be witchy as you put it--yes. I think it was a decision not to hurt others as I had been hurt, which maybe I understand what you are saying. It made me into a sitting duck I think. And in many respects also a scapegoat for years--though I think I have finally gotten rid of that job.

Anyhow--this kind of stress whether it has to do with 'getting' fibro or just makes it worse-- has to be dealt with in order to feel reasonably better.

I so agree if people knew! what it is like...

The itchy tag is a good metaphor--although of course it is a tag that moves around finally am sometimes and that hurts.

Every day, every single day.

Every day around noonish I think the same thoughts-- maybe I am getting better--and then I start looking for part time jobs that I could fit around my babysitting--as if I had never done this before...

About 3pm or sooner some days I begin to get the fatigue, as the afternoon progresses I lose my wind like a sailboat on completely still water. I sit down to take a little nap--but I don't sleep at all. I find I get tireder and tireder as the afternoon and evening progress. Every single evening I think--I might as well go to bed early. I channel surf and surf the net with my feet up and am exhausted. My pain level is not too bad now--I find my thumb/wrist are worst; sometimes my shoulder neck. In the morning in particular trouble with walking--or if I am driving I have pain.. but overall it is fatigue and fog that hurt me the most now. The meds seem to have helped with pain.

I can sleep now at night--once I get to sleep--that is the hard part. Once I finally get to sleep I wake up around 5:30 or 6 am. I would stay in bed but I am in pain--so have to get up to put an end to it. Use a cane at first, but put it aside by the time my dogs are fed and my coffee made.

Sit at pc and pray or read a while until the sun is all up and I'm feeling less stiff.

Every day. Its better in some respects now--I'm not in extreme pain anymore like when I was young. I don't have 4 kids to take care of while in extreme pain.

But I find I feel more and more worthless. Which is not right.

Less 'together' in my brain.

So yes--if people knew they would see how much it takes to do this daily. And I have an aunt who is now in her room all the time-- she has fibro but also a spine problem and other things--so the thing is--nobody in the family has any respect for her. People have this concept of pain as it hurts you work through it--but with fibro-- there is no 'through'. Wish I could explain that--but I 'm sure folks here understand it.

Well so that's a thought. If only 'they' knew.
Mary
 
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ajnsmom replied to missist's response:
Hi Mary,


Hands still numb (peripheral neuropathy) and feet still numb. I can usually walk thru the house without my cane, but after 3 falls, my son got the cane for me to use. So I use it all the time when I'm outdoors since there is nothing to grab onto out there. In the house I can catch myself if I start to fall at a wall or counter. I think my balance has gotten somewhat better since reducing the dose of gabapentin. My new doc at the free clinic doesn't believe that increasing it for pain back around August brought on the neuropathy and balance issues, but I'm starting to think I have been poisoned or something by being on so many meds. My old doc who I had to see once again for SSDI paperwork to be completed agrees with me that the increased dose could have caused this. The bad part is that the numbness is still as bad even after reducing the dose for the past month or so. The fibro pain is a bit more with the lower dose, but I'm thinking about going totally off the gabapentin. I have had diabetic neuropathy years ago which was very painful in my feet but there was no numbness.


About how family treats us, I get really frustrated sometimes because one of my sisters doesn't seem to understand how hard life has gotten with fibro and other illnesses. She asks me the same questions over and over again like someday I'll tell her I'm back to normal or something. Grrrr lol I try not to complain to her about it so much anymore, because she truly doesn't get it. It's like she doesn't hear me. She is a "fixer," and I get tired of feeling like a project.


I had a major blow up with her a few years ago before I had fibro about some childhood issues that kept resurfacing. Basically I totally snapped and went off on her because I was always feeling belittled by her whenever the rest of the family was around, like she was competing for their attention or something. I really don't think she ever forgave me, and I'm still very nervous around her even though I think I forgave her for her part in the fight. I've always been scared of her, to be blunt, not physically, but emotionally scared that she will rip my heart out if I give her the chance, so I don't trust her I guess. I've got issues.


And she is the only family I have here except for my kids and grandbaby. My other siblings still live in VA. I think I'm afraid of all my siblings except 1 brother and 1 sister. So I guess that probably says more about me than about them.


Well, I've spilled my guts here, lol, and that is only part of them. I know I need therapy, but there is no insurance and no money for that, so thanks for "listening."


Linda S. (Jax, FL)
 
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missist replied to ajnsmom's response:
Hi Linda.. Well I am not sure about gabapentin-- cuz my balance issues are older than my use of it. but I do think it is possible. Just got home from physical therapy where was I learned I have a sacroiliac problem and cannot lean forward anymore--as in gardening--so need to come up with a solution for that. I 'm also not to pick up my grand kids anymore unless I am sitting. Oh goodness. Good thing they are on vacation this week, I have no idea how I will watch them if I don't do that. the little boy is not yet 2 and is a climber.

Anyhow-- my sister and I were not good friends as kids really, or as adults. There was an underlying friction I think that was fed by my mom unfortunately. It happens. Whem Mom died there were things said that I think you could describe as you did-- like having your heart ripped out. I was the one who was on the receiving end. Its over, been a few years and I think we've moved on--although we live several states apart so that may make it all easier. ?

The fibromyalgia and the 'fixer' personality--yes-- I'm married to an engineer and his Mom is like a female version --her specialty is fixing people.. She's always very willing to share her opionion of what is wrong with someone and what they are doing wrong etc. that cauases it. Sigh

THAT is one of my family things--I take it all too personally and just would like to be able to get over that.

I do understand--how many times do you have to say--there is not a cure--before people get it?

Perhaps until there actually is a cure.. who knows? maybe one is coming.. but I've had this 30 years and so far--no.

Well I need to go get an oil change so I can meet my friend tomorrow for lunch and to go plant shopping. 8( I will need to find some way to garden without bending forward or picking anything up. ?? hmm

Mary
 
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bette_kaffitz responded:
Hi all,

A friend of ours, when I told her I have fibro, said, "Oh, no. A lady at church has that, and she is in this horrible pain all the time. It's just so awful." I just smiled.

This is the same "friend" who checks out all the corners of my house (dirty), the meals I feed my family (adequate, but fast) and my community involvement (minimal) to find me lacking every time she visits. But her poor church buddy is another story.

The world doesn't get it because we don't tell them. Or maybe it's just because we "don't look sick." Maybe we should paint bright red X's everywhere we hurt. Or we could go, "Ow, Ow, Ow." every time it hurt to move. But we don't. At least not out in public.

So we are misunderstood.

Yes it hurts. Especially from those who should be our nearest and dearest. But there are limits to how often even the dearest of friends or husbands can listen to how bad we feel. It gets tiresome. After a while, they must get fed up. And so, they forget to be kind, understanding, or supportive.

I know that there have been times when I have fallen down in those areas, too. Haven't you?

Unless you know that the person(s) involved are deliberately being cruel, try to give them the benefit of the doubt. Yes, you will blow up now and then. Yes you may feel resentment. But think of it, THEY have to put up with US. And we are not always that nice to be around.

Especially during a flare. Especially when we can't sleep. Especially when we feel misunderstood. That's a lot of "Especially's" for others to put up with.

When my dh and I were first married, we made a pact to always be willing to entertain the notion that it was our turn to give 51%. It's stood us in good stead.

Except during flares. (I can be a witch--spelled with a B!)

Bette
 
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missist replied to bette_kaffitz's response:
Hi Bette-- I get what you are saying. I think though, this thread is maybe a little more on the topic--as some of us have nobody in our family that we can rely on--as in zip. That gets hard. My MIL told me recently about someone's daughter who was dx'd with fibro and the dr told them she would feel much better in a year. Good heavens--what a thing to say! Anyhow I feel bad for her. I was thinking though--in a year, when she doesn't-- what will be said? Cuz I think she's been described to me in glowing terms--and I wonder.. I do think -- what people think of us--really is not the fibro--its what they thought BEFORE the fibro.

Which brings me back to my original post--some of us have things to work on to get our skin thickened up and figure out how to handle that.
Mary
 
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missist replied to missist's response:
Bette-- by 'rely on' I don't mean that will help us-- cuz gosh I can't say that at all-- but I mean more that we feel have respect for us, believe us, don't think we're lazy crack pots.. etc..

anyhow One thing about talking about the whole thing is I feel as if I'm a worse nut than ever. A Whiny etc..

When I went to PT today and the gal said you can't be doing this--i thought of how much I don't want to tell my family that there is another thing on my list of stuff I can't do. I feel bad about it. I used to be the girl who wanted to do yard work instead of housework--who painted walls, etc.. I was told when I was 30 no reaching above my head-- as in no wallpapering. Today I was told now reaching outward to pick things up--and my feet need to be above my hips when I sit and some other stuff.. Add it to the list.

Its not that I"m lazy--I really CAN'T do things. Also--many things I don't want to cuz I feel so ill and tired by the heat, cold, humidity, exersion.. you name it. (something)

So I think if I am beat up emotionally and mentally--it is MORE by me than by anyone. And I wonder how much of that I project onto other people so that I 'think' they are beating me up and its really me?

Mary


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