Just wondering…

[MsAmiNickel]

I have been a member for several months watching and reading the posts and trying to gain the confidence to post. I want to thank all of you who share and let others know that we aren’t alone. I have been struggling with myself since a doctor said that my symptoms fit with this diagnosis. I feel like since this is also called invisible ailment with few outward symptoms that I don’t deserve to claim illness. In fact I haven’t even revealed it as a diagnosis. Does anyone else feel that way? I keep on going on as they say… taking care of my own children and aging parents and working part time and because I keep all my balls in the air with this juggling act that I am not I’ll. No one perceives any change in what I do so there can’t be any real health issues. If I do mention pain or fatigue or trouble thinking or whatever it is written off as age or hormones or my favorite…..well, if you think that’s bad listen to what I am going through. I guess I am asking if anyone else feels like because they force themself to function and they do pull it off do you still deserve to claim illness? It seems like my reality and my public image are so far apart….

 

[JayCS]

Well - the 8 years before my full flare kicked in is I think comparable. Just a bit the other way round: I myself belonged to the people saying it might be age, hormones and I've been thru a lot worse things myself earlier in life. And it was my wife who kept saying: There's something wrong with you, something like rheumatism (she saw my stiffness increasing, me always getting up from chairs like an old man, she saw me cry from the wind & cold when we were on holiday). But I'd always been different. However I did think and ask my GPs if fibromyalgia might be an issue, and aside from trying B12 and D they said yes it might, but none of us really knew much about it aside if from being "a pain".

No, I wouldn't have thought to call this real illness, I was working 50h/wk, just having difficulty with certain things, like getting tired very early in the evenings, due to "a strange sudden & premature aging". But when it smashed in with a vengeance I had no chance but to give in.

The way fibro works our cortisol/adrenaline helps overplay the pain and overdo it. If we don't start self-caring then and in time, taking activities and pressure down sensibly, it smashes us down. It would be rational to act accordingly, and my wife always warned me to do so. But looking back and comparing to you: I wasn't able to and probably wouldn't be able to even if it happened all over again.

But maybe you're more sensible than me...?

 

[Forgetmenot]

We seem to as women take control family life and not to it go.
We do it for so long that know one thinks twice about it,
Only when we stop and really point it out does anyone notice.
I think a lot of family members don’t see it as if they really do they lose that rock.
You know mum will sort it out x

 

[Jemima]

I have been a member for several months watching and reading the posts and trying to gain the confidence to post. I want to thank all of you who share and let others know that we aren’t alone. I have been struggling with myself since a doctor said that my symptoms fit with this diagnosis. I feel like since this is also called invisible ailment with few outward symptoms that I don’t deserve to claim illness. In fact I haven’t even revealed it as a diagnosis. Does anyone else feel that way? I keep on going on as they say… taking care of my own children and aging parents and working part time and because I keep all my balls in the air with this juggling act that I am not I’ll. No one perceives any change in what I do so there can’t be any real health issues. If I do mention pain or fatigue or trouble thinking or whatever it is written off as age or hormones or my favorite…..well, if you think that’s bad listen to what I am going through. I guess I am asking if anyone else feels like because they force themself to function and they do pull it off do you still deserve to claim illness? It seems like my reality and my public image are so far apart….

Welcome here - I'm glad you posted!

I found that, for me at least, I really needed to stand my ground in making the people around me understand what I have and that fibromyalgia is chronic. When it became visible to them, it wasn't that I didn't have to keep all of the balls in the air anymore, but it was totally clear why I needed to stop and lie down sometimes, or cancel plans, or not join in drinking alcohol - whatever it was that would help me keep my flares down. It was a bit uncomfortable educating the people around me at first, but I'm so glad I did. It definitely helped me take a little pressure off that feeling of forcing myself to function - I relate to that for sure!

Perhaps it's worth tackling what you're dealing with one issue at a time. If sounds to me as if there's three interwoven things going on:
1. Your relationship with yourself and recognizing that what you're dealing with is valid and real, and that you're allowed to claim space for that.
2. Whether you want the people in your life to see and understand your illness, so they question less what navigating it involves and requires, and can even provide emotional support.
3. Whether pursuing disability support is something that you want or need to do, and what else you can do to bring your symptoms down and bring more balance to your life.

There's absolutely no shame in recognizing our struggles. For sure, as JayCS said, fibromyalgia doesn't like to let us push through - sometimes we have to step back and find ways to help and care for ourselves, and that starts with self-compassion!

From there, some people prefer to manage fibro discreetly, while others, like me, realize that the lack of understanding from loved ones is damaging for us, so we figure out how to change that. I'm always armed with some shocking fibromyalgia memes on my phone and links to comprehensive articles that I can show to people who don't get it - like ripping off a band aid!

It's also important to remember that stress is very triggering for this condition, so if your current situation is causing a lot of emotional stress, that may be making how you feel worse. Whatever you decide to do, try to place self-kindness at the center of it as much as you can. You deserve that 100%. I really hope you find the right way forwards and that things get easier for you soon

 

[Charz]

You are so right. I think one of the worst symptoms is being so isolated even when with people because no one understands what we are dealing with. Once in a while a very kind person understands but that is unfortunately rare. All my illnesses are rare and invisible but so disabling. Do you listen to Gabor Mate? He says the person who keeps taking care of others will be the one who gets sick. I have learned over the years more and more how great I am in being compassionate to others but I must learn to be compassionate to myself. Self care needs to come first. I have lost most of my friends and family when I have to say no and do what I need to do to take care of myself. I hope you will find a way.

 

[MsAmiNickel]

Wow…thank you all so much. Your insights and suggestions help more than you know.

 

[sunkacola]

@MsAmiNickel I think many of us will relate to what you are saying. I know very well the dichotomy of the inner life and the person that is shown to the world, as I have had that as a part of my life since I was an adolescent. For me at first it was serious long-term depression, and hiding that in order to be a functional human being and take care of myself because I had to. Later on, fibromyalgia was added to that, at a time when my work was very physical as well as mentally challenging in nature. Being so accustomed to just carrying on no matter what, I continued to do so, and still do.

You do what you have to do and no matter what is going on for an individual, if they have important responsibilities that cannot be ignored or passed to someone else most people just step up no matter what. People will say, "how can you do it?" and the answer is simply that you just do it because there is no choice.

This is what you are experiencing. Be sure that you carve out enough time to take care of yourself in the most important ways like sleep and good food and rest and exercise, because if you are not functioning it all goes downhill. In that regard, care for yourself needs to come first, even though taking care of your family has to come first. And there is the split, the challenge. It is a balancing act, and not an easy one, but with practice and finding out what works for you to ease your symptoms, you will find it.

As for claiming what is going on inside to others, my approach (which is not necessarily right for everyone) is not to tell anyone who doesn't need to know, or who is not close enough to me that I want them to know. It has been a waste of time for me to tell people outside that small circle because I do not need or want pity, sympathy, advice, disbelief, or any of the many reactions that we usually get.

 

[Edit]

so sad when we feel totally exhausted and lot of people just (think or say it) "pull yourself together". this is when I start get so angry. I feel very hopeless , but I just gave up to explain this to people.

 

[sunkacola]

@Edit , one thing that has helped me with this is to remember why people have this kind of reaction and say these things to us.
First, they have no idea what life is like for us, and therefore have no concept of how hurtful they are being.

But beyond that, and more importantly, I truly believe that people say these things and have these attitudes because they do not want to believe that it is something that just simply happened to you and is out of your control.
Why don't they want to believe that?
Because if they do, then they have to face the fact that it could happen to them!

As long as they go around with the attitude that it is somehow your fault, or somehow something you could just "get over" if you only Did The Right Things or Tried Hard Enough, then they do not have to recognize the fact that this could happen to anyone at any time, even them.

this holds true for many things, I think. but it is especially true with fibromyalgia and other "invisible" syndromes and diseases, including many forms of mental illness.

This doesn't excuse what they say or do at all.
But when I remember this it helps me to understand how someone who really is not a bad or hostile person at heart would say such things. I experienced this most of my life with depression and anxiety and in more recent years with fibro. It is the same thing in both cases. People are afraid. But they do not want to face the fact that they are scared.