Just need to talk

dkalaf

New member
Joined
Feb 8, 2022
Messages
4
Reason
Undiagnosed
Diagnosis
03/1988
Country
US
State
NY
Hi everyone. I just wanted to talk to those that would understand. I had rsv a couple of weeks ago and it caused a flare. Haven't had a bad one in a while so I guess I thought I was good. You forget how bad and lost you can feel. I look back and wonder why I haven't accomplished much in my life. Then I remember you've had this more than half your life. And then with people thinking you're fine and wondering why you sleep so much. Are you just lazy? Everytime I see my family they have to give me a dig about it and then I just feel bad about myself. Anyway, just needed to vent. Wishing you all good, pain free, energized days ahead.
 

Auriel

Very helpful member
Forum Supporter
Joined
Jun 8, 2021
Messages
979
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Hi dkalaf, welcome to our forum ☕🍪, completely get it, fibro takes a lot from you there's things I wish I'd done/could do but the fibro (and past traumas) prevent me, I know a lot of us on here have experienced other people thinking we're fine and that we just don't want to do anything (my family included extremely toxic) so yeah 100% we get it we empathise, it's not a nice condition at all, acceptance and acknowledgement is vital and don't feel bad if you can't do things or if your having a really bad day (it's just part of the condition we've got) if people are too hurtful, limit contact, or cut them out completely (even if it's family, I had to I went no contact eventually with mine, I had to) anyway, I hope this forum is of some value to you, and hope we can get to know some more about you too, 💫🧞‍♂️💫
 

cookiebaker

Very helpful member
Joined
Jul 26, 2022
Messages
675
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
hi from me, too, @dkalaf

totally get where you are coming from. Bad enough to be hurting all the time, but then to get sick, too? Seems like it takes us longer to recover from an illness as well.
I too had cut contact with those that had little or no understanding of my conditions - they either didnt want to know, or didnt care enough to find out.. the ones that did are no longer alive... in some ways it sucks, but in others.. it is what it is. I am better off without the drama.
Dont be afraid to just say no to doing things if you are not up to it. If someone has a problem with you taking care of yourself, remember, it is their problem, not yours.

For anyone that is interested in trying to understand - these two images were very helpful in getting my partner to understand what I feel like - if someone could actually see how I feel, this is kinda what they would see...

safe_image.png
 

Badger

Senior member
Joined
Apr 2, 2021
Messages
260
Reason
DX FIBRO
Diagnosis
01/2001
Country
UK
What I find striking is other people soon moan or become grouchy when they're ill or have a minor injury affecting their routine. To be fair that's life, but to explain Fibro I say just imagine the fatigue and pain never going away. We still need to walk on our bad ankle but long walks etc. are out of the question. The social and emotional side of living with it is difficult, but we must learn gently to face it and set our boundaries. We feel bad enough as it is without becoming unsettled following other people's reactions. As I've read on this forum it helps to be straight, polite and short in stating how we are or what we need to do.
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,453
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Welcome, @dkalaf . You can come here to visit with us any time. This is a supportive forum.

One thing I know is that when you have had most of your life a condition like fibromyalgia (or chronic depression or some others that are or can be made invisible), it is possible for it not to be actually diagnosed for some time. And even if/when diagnosed, unless it is bad enough to land you in the hospital or otherwise incapacitate you most of us will go around trying to act as normal as possible. We do this because even though that takes a toll on us it seems to us like the only way to manage.

A very competent or upbeat appearance in a person can hide deep pain or depression that lies just under that carefully constructed surface.

I think the worst part of that is when you don't end up accomplishing what others expect of you because of your good front, and they mention that to you in a negative way enough times over enough years you will believe them That you are (fill in the blank - underachiever, not trying, a failure, lazy... etc) and you will inevitably assimilate that into your psyche and feel bad about yourself. If you have felt bad about yourself for a long time, changing that and simultaneously trying to change others' perception of you is a tremendous challenge. I am here to tell you that it can be done. I know because I have done it. But if you are having a hard time with it, don't allow that to make you feel bad, because it is hard for anyone, and takes time.
 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
460
Reason
DX FIBRO
Diagnosis
02/2022
Country
US
I feel you @dkalaf . Boy, it’s hard enough facing the reality that of all my expectations/wishes/dreams for myself I may only accomplish a few. Other peoples expectations? Get in line, folks!

What really helped me manage how others affect me was simple. I respond to people’s expectations one of two ways. There are two types of people in my analogy: people that don’t understand how FM affects me but if they could feel what I was feeling would never ask me to punish myself by doing too much, and people that would ask me to punish myself even if they knew what I was feeling.

The first group of people I honor by doing what they would want me to do if they understood - I take care of myself. Its what you would want someone else to do to you. You would wish that someone would ignore you if you were accidentally asking them to harm themself. You would be grateful if they ignored your request. So, I ignore their requests knowing that, when they do figure things out, they will be grateful I had.

For the people that would still express disappointment in my decision to not harm myself even if they understood what they were asking me to do, I limit their ability to affect me by just communicating with them less or not at all. Those people are people you can never make happy. If you can’t make them happy you should at least make yourself happy by limiting the distress they cause you 😉

We definitely understand! It’s hard but the more you make the decision to protect yourself the more obvious it becomes that you made the right decision.
 

dkalaf

New member
Joined
Feb 8, 2022
Messages
4
Reason
Undiagnosed
Diagnosis
03/1988
Country
US
State
NY
Thank you for your lovely message. I have tried to leave behind those that don't believe. That's hard too because you have less people in your life. I have learned to enjoy my own company and feel blessed for each day.
 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
460
Reason
DX FIBRO
Diagnosis
02/2022
Country
US
Thank you for your lovely message. I have tried to leave behind those that don't believe. That's hard too because you have less people in your life. I have learned to enjoy my own company and feel blessed for each day.
Oh you and I have a lot in common. I love my own company 😂. And blessed we are 🙏
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,453
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Thank you for your lovely message. I have tried to leave behind those that don't believe. That's hard too because you have less people in your life. I have learned to enjoy my own company and feel blessed for each day.
Yes, one does have fewer people in life by eliminating those who are bad for you.
But people who are bad for you have a negative effect on so many levels that it is better to be without them.

One or two people in your life who are supportive and helpful and understanding, and with whom you can be the same back to them, are vastly more valuable than 5 or 10 people who are only doing you harm.
When it comes to people in your life, Quality is always more valuable than quantity.

If you eliminate those who are hurting you and focus your attention on those who are good for you, you will find the truth in that and most likely feel great relief that the toxic people are out of your life. I sure did. It was as if a huge weight was lifted from my back when I freed myself of those individuals who were toxic to me, and still feel grateful that I found the strength to turn those people away. My life may have fewer people in it but at least they are people with whom I have mutually positive and supportive relationships. Those relationships are golden, and the toxic ones I eliminated seem like cheap plastic compared to fine gold.
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,453
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
One more thought.
I say all of the following because these are things I have learned from many years of dealing with people and relationships of all kinds. I didn't think this way when I was young. but this is knowledge I have gained.

This is rare. But it can happen this way: If you tell someone calmly and respectfully that you can see how hard it may be for them to believe you or to be supportive, that your inability to be what they want can be disappointing to them, and you are not saying they are a bad person or anything, but if they cannot change how they are reacting to you and accept you and support you for how you are, you will have to choose to take care of yourself and not have them in your life any longer...........that person might think again about how they are treating you, and might even change.
As I say, it's rare and shouldn't ever be something you expect because 95% of the time that will lead to disappointment. But if you think someone genuinely cares for you, it is worth a try.

Having been there and done that, I will offer another word of advice, though. Often a person will say they will "try". That's fine if they really do, and you can see evidence of that effort. But if genuine change is not seen within a few months at the most, they are not trying, but rather using that statement as a way to continue as just they have been. Don't keep giving them "another chance" over and over, because if you do it will go on forever. This, of course, applies to any form of mistreatment or lack of respect.

The thing to remember is that it is a mistake to think that if someone truly cares for you they will understand, and/or be supportive. This just doesn't prove to be true.

There are many kinds of people and many kinds of caring, and not all of them are selfless by any means, and not all are the same. Everyone loves or cares in their own way. For some people this is selfless, for others it is self-serving, and there are many variations in between.

Some people are capable of things that others are not. There is not only one way to care for or to love another person, and it's unwise to expect that everyone sees caring for another as you do or can love the way you do.

If someone says, "if they love you they will....(fill in the blank)" what they are really saying is that if they love you the same way I do, they will.... Which may not be helpful if the person you are talking about is very different from the one saying that to you. Maybe if YOU love someone, you will always do your best to be understanding and supportive no matter what, but not everyone else loves or is capable of loving or expressing that love in the same way you do. And if they don't express it in the same way it doesn't mean they don't care.
Again.....we are all different in our capabilities and ways of caring and abilities to show that in different ways.

Just because someone understands and is kind doesn't mean they truly care for you and just because someone refuses to believe you or is not understanding or supportive doesn't mean they don't care for you. It can mean that, for certain. But equally it can mean something else, and have to do with what that person is capable of rather than having to do with you or how they feel about you. It might even have nothing to do with you at all, but be due to what is inside that person.

For some people, the best they can do is to care for you in a self centered way. For some people the best they can do is care for you but not be able to get to the point of understanding enough to be the kind of supportive friend or family member or partner you need.

None of these things mean that the person who is unsupportive is necessarily a bad person or doesn't care about you. It just means that for whatever reason they are not helpful to you, not supportive, or in the worst case they are toxic to you. If this is the case, you have to choose whether you will allow that person to continue to hurt you, or take care of yourself. There's no inherently right or wrong choice. There can be and often are many factors that go into making such a decision. It is not always just a simple thing and it can be excruciatingly hard or complicated depending on your circumstances and what the relationship is.

But there is always a choice, and if you make the choice to keep a toxic relationship, it is good to do so with your eyes wide open and knowing what you are doing and why. Knowing that you are choosing to do something harmful to yourself. And if you make that choice, then accept that decision and also choose not to complain about it, because at that point complaining about it will only add to the hurt it is already causing you by making you feel like a victim. Rather, find ways to work with it, to empower yourself and to protect and take care of yourself the very best you can within the situation you have chosen.
 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
460
Reason
DX FIBRO
Diagnosis
02/2022
Country
US
Definitely appreciate the distinction between caring and the ability to express that care in a helpful way. In the general sense I agree.

If we are to reduce the general sense to in the sense of bottom line FM support I wonder if the form of support I crave is something that not every person can do. It seems to me they can because what I crave is someone to take me at my word. Just believe what I am saying.
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,453
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Definitely appreciate the distinction between caring and the ability to express that care in a helpful way. In the general sense I agree.

If we are to reduce the general sense to in the sense of bottom line FM support I wonder if the form of support I crave is something that not every person can do. It seems to me they can because what I crave is someone to take me at my word. Just believe what I am saying.
It seems to you that everyone can do what you want, but not everyone can do that, and that is the bottom line.

There are people, and I have known a few, who don't tend to take anyone at their word unless it is about something they themselves know or have experienced or agree with. This is often due to insecurity or lack of confidence on their part, causing them to want always to know better than everyone else and therefore reject things they don't understand. Of course, there are also many other reasons for this kind of thing. sometimes it has to do with that person's experiences with people, having been deceived in their lives, and so on.

In other cases, the person doesn't want to believe you because that would mean a number of things to them. For one thing, that they would have to change their mind and behavior, and for another if they believe you they may have to face that such a thing could actually happen to them. These fears and resistances are usually not on a conscious level and the person often doesn't even know they exist, but they affect the person's ability to accept what you are saying.

But it doesn't matter the cause.....some people just won't give you what you want or need in one or another kind of way. This is true across the board, about everything of course, and we all know this. We tend to forget it when it is someone close to us and we are telling them we are ill or in pain. We think that situation should be different and everyone should believe and/or understand or at least try. But unfortunately, it's not different.

Understanding this about other people and accepting it for ourselves is imperative. Time or energy spent thinking or wishing someone would be different is, beyond a certain point, a waste of time and energy that you need to save for things you can change. It is an important step in our own journey to being able to live with and manage fibromyalgia or any other debilitating condition that is not obvious to others.

For that matter, this is true for people who have a condition that is completely obvious to others. People in wheelchairs, for instance, are often treated unkindly and often have friends or family members who lack understanding or even the willingness to try to understand or believe what they are being told or to change their behavior. This is just how some people are.

Whatever your situation, best thing is just to find those who are supportive, and cherish those relationships, and to whatever extent you can to let the others go.
 

Badger

Senior member
Joined
Apr 2, 2021
Messages
260
Reason
DX FIBRO
Diagnosis
01/2001
Country
UK
@sunkacola, excellent advice and food for thought. When telling non sufferers about my difficulties they may say very little in response. It can leave me wondering is it them or have I done something wrong. In the past few years I have been reminding myself and tried be open to it not necessary being my fault. Seeing things through the lens of depression robs us of perspective. Perhaps they find it an awkward subject for example and they may not know what to say. Everybody's different and I've made the mistake of assuming the worst in the past, although it's frustrating when family / friends don't have much to say about it. A good friend of mine who is polite and attentive does suffer with chronic pain. It's quite different speaking to him and I'm very lucky to have the support.
 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
460
Reason
DX FIBRO
Diagnosis
02/2022
Country
US
It seems to you that everyone can do what you want, but not everyone can do that, and that is the bottom line.
Herein we disagree, sun. And I suppose I might say that is the bottom line of this conversation 😂😂😂 No worries. We are all bound to disagree with one another somewhere along the way.
 
Top