I just need to vent

Support
1

I spoke with someone today at work and it really struck a nerve with me. As you know, us fibromites don't have many nerves to strike. I had to get my feelings down on paper (computer screen). I only wish I had the gaul to say this to his face. This just goes to show that words DO hurt. Thoughts?

Who are you to judge me? Why is it okay for you to discount my pain and even think about comparing it to your own? I’m not discounting your pain, but I do realize that everyone is not the same. If your leg hurt and my leg hurt, what makes it the same pain? When you have issues, you also have my empathy. When I have issues, I also have your sarcasm? There is nothing fair about that.

What if the tables were turned? What if you were having a heart attack and I said, “Oh, you’re just getting old. That’s what happens. My chest hurts sometimes and I just deal with it and move on.” What would your reaction be then?

Unless you have walked in my shoes, you don’t have a clue as to what I’m going through. I don’t want your sympathy and I don’t want your pity. I just want your compassion, not to be dismissed as nothing. If it was nothing, I wouldn’t get so angry when you speak ignorance before you think common sense.

I’m not a hypochondriac. I’m not looking for drugs. I am not making things up, as I have enough to deal with as it is without making something up. My fibro fog won't allow me to lie about things because I would then have to remember what I said. I have a hard enough time remembering what actually happened, much less anything else. I don’t come to you to ask your input for anything having to do with my health or how I feel because I know you don’t have a clue as to what I’m going through. I try not to bring it up at all. When you see a grimace on my face and ask if I’m okay, I normally just say that I am in deep thought. I don’t want to tell you that I am in pain because you would then consider me a complainer.

I struggle every morning to get out of bed. I struggle every day to go to work and act like I’m okay. I struggle to be a mom and wife when I’m not at work. I look so forward to getting ready for bed because I know I can finally lie down and rest, but then I can’t sleep. Nobody knows what it’s like. I may look okay on the outside, but on the inside I’m a mess. I HAVE to function. No wonder I’m so exhausted. I’m spending so much time pushing myself to handle daily stressors. I guess you could consider me a high functioning fibromyalgic?

I am not a weak person. I am not just giving in to this thing. I am not using fibromyalgia as an excuse. I used to be a very strong person and wouldn’t let anything bring me down. When you go to doctor after doctor after doctor for years, you finally get to your breaking point. That’s where I am now. It’s got me down right now, but not forever. I’m going to fight it, once I find the strength. I’ll come out ahead one day, but you, you’ll still be judging people. One day, something will happen in your life and you’ll sit and wonder “why me”. I can only hope it will stop you dead in your tracks and realize, “maybe this is my payback”.

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Dear Natash,

So sorry you are going through this, I don't know if nipping this in the bud with a talk to this person would do you any good. I don't know if you want to get a boss or HR person involved, but this is a form of harrassment in my thoughts, but that can bring it's own reprecussions.

The important thing is that it doesn't eat at you and make you sicker! Sometimes it is better to say something in a civil, yet firm way, rather than to let it build into an explosion!

I do have compassion for you, I have empathy as well. Sorry you have to deal with such an insensitive jerk on top of everything else.

Jillian,

So sorry that the insensitives in your world are your family! We all seem to get it from somewhere, perhaps we should just start telling people we have a rare and incurable disease, and leave it there!

Nice to be able to come here where people do understand and we can go after these insensitive ones! Just remember the 'Instant Karma' song! Sing along!

My heart goes out to all who have been 'put down' while they suffered!

Hugs,

SK

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I know I could count on you guys to understand. It wouldn't be so bad if this person wasn't supposed to be a friend of mine, not just a co-worker. Worse than that, he is a minister. I thought they were supposed to be understanding and not judgmental.

Normally, yeah, I might have said something, but there's a lot of drama in the office and I don't want to make things any worse than they already are. I feel like they look down their noses at me when I have to leave for an appointment. It's crazy!

Jillian, hang in there. Believe me, it gets better. I've had many days that I didn't think I could keep going. I'm in that position now. I know that if I just try to keep a good attitude that it will get better soon enough.

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I read and re-read your letter and the last two paragraphs really stood out to me. They seem like a cry for help. I'm wondering if the work itself is also becoming overwhelming to you, as you mention getting to a breaking point. I'm not trying to discount the rude, thoughtless worker at all, but I'm also hearing the voice of a person who is in great pain at work and who is pushing herself over her limit. Do you absolutely have to keep working? If not, can you do part-time work? I ask because you sound like you're about ready for a breakdown. Mind you, I wouldn't blame you a bit, if that's the case. Work is just killer when you have this illness.

For the life of me, I can't understand people who seem to take pleasure or pride in telling others how inconsequential their feelings are. To me, that's another form of bullying and it's disgusting. Maybe what would be best for you would be if you put it into your own head very firmly that you have an incurable illness with incurable pain and you refuse to discuss it with anyone who isn't supportive or at least neutral. Shut down jerks like this by giving them absolutely nothing, no info, no reactions, nothing. Just an "I'm fine," no matter what. This person deserves none of your "pearls," i.e., your precious thoughts or feelings; do not cast them at swine, as the saying goes.

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Jillian,

I can't imagine how painful it must be to have an unsupportive family. Unlike fibro, your spinal lipomas are very easy to see with the proper instruments. And not only that, but you have as many as a 400 lb woman! If they refuse to look at the medical info on this topic and refuse to be moved by it, then they need a heart transplant to get one. I know that sounds harsh but it's ridiculous for them to leave you so alone at this great time of need. I would never wish your condition on my worst enemy.

Is there any chance that you could bring one or two of them to the doctor with you, when you go back for more info on this illness? They need to know that it's real and you're in great, great pain from it.

Whatever their reasons, they need to get off of their apathy and get working with you and your docs to help you out of this mess. Again, if you have a social worker, could she talk to them? Or one of your friends? Or a clergy member? Someone needs to talk to them and intercede for you. I truly hope you can get thru to some of them. If not, I hope that one of your friends will pick up the slack for you. This is not something you should be left alone with.

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Time to give HIM the surmon on the mount, girlfriend! I'd really hit him hard with the good book! That is unforgivable behavior for a minister!

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You're right Petunia Girl! I've been there for a really long time and have seen many changes and unfortunately was involved in some of those changes. I have never been this miserable the whole time I've been there and I don't know what to do. I am so afraid that I will say something to someone and just blow. Sometimes I feel like my body is going to explode. I can feel the tension build up inside me. I so, so would like to find something else, but with the way I'm feeling here lately, I wouldn't make much of a good impression on any perspective bosses. I wonder if I could just cut my hours down that it would be better? If I did that, of course, "they", the catty ones, including my supervisor would have a hey day with that and then I wouldn't even want to comeback. I'm sorry, I could go on and on, but I have to get to bed so I can do it all over again in the morning. Maybe when I see him, I may mention to him that he really hurt my feelings by the way he was talking to me. "So how many other diseases do you have, gosh, you have your head (trigeminal neuralgia) and then it was your elbow (ulnar neuropathy) . . . what other diseases do you have?" My reply to that was that fibro wasn't a disease that it's a syndrome that I will never get rid of and it will affect me in many different ways. I feel like all of these issues are separate and apart at the same time. I told him that it was a central nervous system disorder and I could have issues everywhere in my body. Geez!!! These people need to just try to accept it. sorry to keep on and on, but I took my Ambien to help me sleep and it has a tendency to make me ramble. So I'm logging off now. Until tomorrow. Keep your chin up.

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Hi Natash,

Yeah, I could definitely feel the build up of frustration in your initial letter. Most, if not all of us get to that point at work eventually. The pain, the fibro fog, the fatigue all wear away at us until we feel that we just can't take another moment of it. And how I remember feeling just as you did about not being able to make an impression if i ever went for another job. Heck, I didn't even think I had a bit of strength left to apply for one.

Cutting down on your hours might be a really good thing to consider doing. You would have more time to recover and even sleep. A full day is killer with this syndrome. I can't imagine working full-time again with this illness. If I were you, I'd give it some good thought. Don't forget, you're trying to manage a chronic illness, which should be called chronic pain syndrome (thank you for that name, Mo.) Then you're dealing with kids, and then a full-time job on top of it. No wonder you're frazzled!

As for your fellow employee, do what you're comfortable with, however, he might get snarky in response. I think he deserves nothing from you, no acknowledgement of his idiocy, no future info on your illness or how you're feeling, nothing. Keep him away from the important parts of your life. He's an insensitive jerk who doesn't know when to STFU.

I'm getting sleep too so will bid you a good night and a better day tomorrow. Sweet dreams!

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A minister? Perhaps he's forgotten the very meaning of the word "ministering!" Wow, that blows me away. Plus he's a friend? OOOOOOOkay, then, perhaps it's time to do some copy work, copying pertinent info on fibro, then mailing it to him using his minister title, and saying, "I'm in need of ministering. I have a co-worker who doesn't understand my illness and who makes thoughtless remarks about it. He needs to read info like this (referencing the copied info) in order to be ministering me in my time of need. Can you help?" I'm not sure I'd even sign it. Just let him see it and see if he can get the irony of the situation and then hopefully educate himself.

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I like this idea, Petunia!

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Well get out of my brain . . .. you took all the words right out of my mouth!!

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Yes, very good idea, Petunia. I thought about printing something out and giving it to him, but then I wonder why even bother. I just hate when you call someone on what they say and they'll come back with "Oh, I was just kidding with you." I think I'll just drop it and if it comes up again, I'll just tell him, or anyone else, that I just don't want to talk about it. Today is new day and I'm working on a new attitude!

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Jillian, I hope you're feeling better today. I can offer a proverbial shoulder to cry on. I totally get it about family not understanding. My husband is tired of me feeling bad all the time and he thinks I'm just trying to get out of what I would normally do. He's tired of me being depressed all the time. Well, I've got news for you buddy! SO AM I!!!

I don't understand how people that know you, the real you, could be so uncaring. It's nice to know we're not alone though. This site has been a Godsend to me. This site is very comforting to me. Hugs!

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Natash,

You sound like a fighter which is totally awesome! You are a very strong person. The person you talked to unfortunately will never realize that they hurt anyone. Unless they change which is totally up to God.

I have been struggling with this for 10 years just diagnosed in July. One thing that I am learning is people outside of this group even families don't understand and won't understand until they get diagnosed themselves. I think of my condition our condition as a precious jewel that can't be shared with anyone not worthy of it. It seems in my experience nothing good comes of it. It does require more out of me because I work as well and when people look at me they see nothing plus people really only want to talk about themselves in general.

Hang in there.

Andy

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Thanks Andy. I really appreciate that. That is a good way to look at this jewel of ours, but I'd be more than happy to cut it down from the huge monster that it is into a tee tiny speck of diamond dust. Oh well. A girl can dream, right?

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Hi Natash,

How are you today? Here's hoping everything is a bit better, a bit brighter for you today!

I'm pulling for you, we all are!

SK