Why do I have to justify again and again? When does it end?

Hi everyone - I had quite a day and I am just SO sick of having to justify my illness. It is just getting ridiculous how callous people can be. These people are adults, for God's sakes. My son is going to get married to a wonderful girl in September. His fiancee's name is Casey. In the past 2 years I have gotten to know her mother and father very well. About 4 months ago, Casey's mother (Linda) and I started emailing each other, talking about the upcoming wedding and being very excited about everything that are coming up in the planning of it. She has known about my illnesses for about 4 years now. Linda had her annual Xmas party and I was there with my son. I wasn't feeling well that night, as I was in the middle of a flare-up and I have the tendency to be quiet and withdrawn when I am sick. Linda has known all this time what has been going on with me. Well, in the last few emails to Linda, I had to explain, yet, again, what FIbromyalgia is. She has been after me to 'get a job' and make decent money and she also said that she and her husband Jeff, have gone back to work in order to help their daughter, Casey pay for the wedding. Of course, I feel really bad that I can't help my son financially, but my son has been just wonderful to me and knows what I go through. Tonight, I got an email from Linda, again, telling me I should 'pick myself up' - get out there and make my son Proud!!! What the hell???? What does any of this have to do with my son?? OMG - I was just livid and furious over what Linda emailed me. Well, after carefully thinking about it. I emailed Linda ALL the symptoms that I go through, as she doesn't know the whole story I didn't feel that I had to justify, yet again, to another person what was going on with me. So, again I am caught justifying to Linda why I am sick. Why is it that people can't just take my word for it?? Just because I may look good on the outside, doesn't necessarily mean I am good in the inside. II f they can't 'see' the illness in front of them, they just jump on me about it all. I really let Linda have it though. I didn't cuss, but I was very firm with her in explaining my illness and that she needed to accept the fact that I can't move around like normal people. Linda is the type of person who is 100% filled with robust energy every single day. She is like the energizer bunny, but multiply it times 3!! She takes tons of vitamins, exercises every day and so on. I think everyone here is getting the picture of what I am up against. I am so tired of all this, you know?? For 30 years I have been 'second guessed' by a lot of people - sometimes even doctors and nurses. I am feeling better now that I have posted this and really want to know if any of you have been up against this? I mean, seriously, what is WRONG with these people???? Hugs!! Laurie

Oh yes Laurie this is what happens frequently. I suppose because we don't look sick people think we aren't sick anymore. I have also had people say, "Well by now you must be getting better." I am almost 70 yet when people ask me if I am still tutoring and teaching piano and voice from my home and I say No, I have retired, they say Well what do you do with yourself? You must be bored. Why don't you volunteer? As I have lived in this same place for 44 years people remember how busy I have been all my life so they must think that I am like the energizer bunny.

Yes it hurts when people say these things, but you have to get used to it and remember that not everyone is like this toward me.

Hi Rachel - Thanks for responding. I, too, get people that say 'I should be feeling better now' and 'what do you do with yourself??' The reason this upsets me so much at this time, is the fact that Linda (Casey's Mom) is going to be a part of my family and vice versa. I don't want to have tension between us - but I must stand up for myself when people attack my integrity and my illnesses. Laurie

Hi Laurie,

So sorry you are being put under the gun with this, or is it more like thrown under the bus? Sorry that may have sounded a bit harsh, but her treatment of you sounds rather harsh! I'm sorry to say that it is unlikely that she will ever understand, unless she is struck down, but chances are that no one will be as bad as her...

I think I can honestly say that every single person who has fibro goes through this and sometimes it is their very Dr, or husband/wife, parent, sibling, child, best friend who treats them this way. It is just the truth, and such a sad truth.

My Rheumatologist teaches as an asst Univ Prof, when I asked him what fibromyalgia was he explained it this way "It is a condition, not a disease, CAUSED by chronic pain. If you take a lab animal, severely injure it's left hand and leave it untreated, this chronic pain changes the brain until every place you touch that animal, the pain will be severe. To treat the pain of fibromyalgia, you have to find and treat the cause". His explanation of the 'fog' we refer to is that it is "caused by chronic pain, and lack of proper sleep, caused by chronic pain". This is why I am always so adamant about everyone finding a good Rheumatologist. Let them rule out some things, they are all Internists (diagnosticians) with an advanced degree in Rheumatic/Autoimmune diseases. If they know their profession, they know what we are up against, I really believe that every single one of us should be under their watchful eye and good care.

I really don't have any advice as to where you go from here with Linda, but her words to you are very judgemental in my opinion. I am very protective of all of you, and will stand up for you and beside you EVERY time!

In many ways, I am very caring and compassionate, but I am also a fighter, I have to be, I am up against some very ugly diseases, I have lovely little grandkids that keep me fighting this. Thank God I have a good reason! Focus on your reason, don't let her drag you down or around! Chin up girl, just don't let her intimidate you, or make you feel inferior!! I'm certain that you are one great Mom, fibro or not!

We understand and are here for you, please remember that!

Love, hugs, and support,

SK

Just remember, I'm around if you need a shoulder, an ear or a friend!

Hi Sk - thanks SO much for your support!! I do feel better now that I have talked about it. You may be right, in the fact that Linda may never understand what is going on. It just got my 'hackles' up a bit. I love the way your doctor explained what Fibromyalgia is. Great description!! I am going to save it. I might make copies of it to keep in my purse, so that if people start bothering me about my illness, I will just hand them a copy! Just kidding! Laurie

Hi Laurie, I understand your frustration, having been through it myself. Sometimes you need to just leave ignorant people to be bcoz no matter how you try to inform them they are just soo wrapped up in their little bubbles that they will NOT see or listen to you. Stop wasting your time on people like this as they are toxic my friend. You go on and take care of yourself. I’m sure your son understands exactly what you’re going through so don’t feel bad. Take care & Hugs

Wow! She is completely clueless!

I have stopped justifying myself to anyone. Who are they to question me? I've had lupus for 4 years, I inject a toxic chemotherapy drug into myself every week in order to function somewhat normally and guess what?? People still don't "get it".

People should be able to at least try to understand and be a little sympathetic, but honestly, if you've never lived with illnesses like these, you can't possibly know what it's like. Doesn't excuse acting liking jerks though.

I have to admit, I have told no one (other than you guys and a few good friends) that I've been diagnosed with Fibro. I figure no one really cares anyhow, so why bother? I think it's easier to just keep it to myself and deal with it.

In the case of Linda, though - you have to deal with her, at least through the wedding planning (after that, you won't have to help with stuff or spend so much time with her). I would have a hard time keeping quiet, and would probably tell her to knock it off. otherwise, she's going to make you miserable. :(

My heart feels for you. I think maybe we tend to measure our worth against others abilities and lifestyles and this makes us feel guilty and sad. I know it does at least for me. It is essential that we see our inner worth and we block out all of the negativity surrounding us as the added stress just makes things worse. If I were you I would minimize contact with this woman as she is obviously toxic for you. Sometimes I wish these doubters could just experience this disease for one day, but then I think how horrid, I really wouldn't wish this on my worst enemy. I am sorry that this woman will be such a part of your family. Hopefully she can be educated, but I wouldn't count on it. Don't feel bad about defending yourself, ever, period. I would have to agree with others on here. It is highly doubtful she will understand, but the real issue is that you have to stop caring. Oh, my heart hurts for you. I get it, as others here. I really do. Be blessed this day. We are here for you.

I hate this too. "You look fine" syndrome.

They will never understand and as someone else commented it is sometimes not worth the trouble of getting them to understand. I have to justify it to myself all the time and that is hard enough because I have a hard time some days and I remember when I could.

I would keep the peace until after the wedding. Talk to your son (which you already say that he is really understanding) and mention that you are doing your best despite to help with the wedding and you will do all that you can to make it a wonderful day.

You only have to make your son happy in the end and if she is not willing to understand, then she has to be a lesser part of your life.

Maybe even at the wedding itself, throw a little passive aggressive comment in the speech. (that is a little mean, but she wasn't exactly nice to you)...

/end ramble.

Laura@@@@@

Maybe u need your son to explain more about it to his wife to be and she can then explain to her mother. One way is the spoon story. Not sure if u have heard that one but it goes like this, U start the day maybe with 5 spoons if you are lucky. For each thing you do takes a spoon away because of the pain and fatigue. So every time you may clean the kitchen thats one spoon then later u may walk the dog thats another spoon and so on, So if u get to the afternoon and no spoons left u can not do anymore with out putting yourself in so much pain it takes days to get over it, I know I did just that I did some cleaning vacuuming 2 rooms and washing some dishes and I forgot about a game we were going to because my daughter had been picked as one of 20 finalist for a truck being given away that night and we had free tickets for two so to make it a nice outing for us three I bought another ticket and with prayers and lots of hope as we need another car for us to get around in as mine is playing out we went, I forgot about the long walk to and from the arena in OKC where that Barons play the hockey games and the time spent rooting them on and sitting on seats where u could not move your legs and so on. My daughter got to go down on the ice with all the other picks but it depended on who got the closes to the weight of two animals they had chosen. Well she got close but someone else got closer so we did not win but she had a great time as well as my son. That happened on Sat. it is now Tues and I am still in so much pain and so tired I have been in bed most of the time. I am glad I did it but I have suffered so much for it. My kids understand mostly but some they still have a problem with it. I knew I would be exhausted but I would do it again for the time we had together. But I think I would have left the cleaning for another time. Since I felt so bad I was not able to go to church and that is where I have the problem with people not understanding. But they are learning LOL.

Hi Naz - Thanks for your support, It's really appreciated. I agree, Linda is a 'toxic' mess and I need to just stay away from her whenever possible. She is not the kind of person to let up on a subject. She has told me she is a feminist - and I just rolled my eyes. Although I believe in empowering women - Linda takes it way too far! Hugs, Laurie

Hi Red - I, too, have learned from experience to just keep quiet about it all. It's just stunning to me how people can be so callous and stupid! What really makes all this aggravating is the fact that these people are adults and they should really know better. But, I made a decision that after the wedding of my son, I am going to pull away from Linda. I s do know that on Holidays, there will be the obligatory get together - and I am fine with this. However, if she should keep it up as she has been doing, well, I am going to really lose it and she will she my 'angry' side, It isn't pretty!! Hug!! Laurie

Hi Laurie,

This is my favorite description of fibro, as far as indepth and intimidating. Though my Dr's description is good for us, this may be better for others, especially of this 'ilk'. I'd send this on in an e-mail. REALLY!!!

http://health.nytimes.com/health/guides/disease/fibromyalgia/print.... And perhaps this may shut some of them up, perhaps. Some will just never come around. I think your idea of passing this out may just 'handle' some of them and save you from a 'blow up' with them!

Well, it should have gotten your hackles up, it did the same to me! That was a low blow!

You know, I have also mentioned many times in my posts that the drug commercials make people think that if you take their prescribed med that you will be well and fine. This is very misleading, but nothing excuses her behavior! I just don't think she will soon to be 'best friend material'!

My dear little grandmother used to say, "It's a great life, as long as you don't weaken", bless her heart, she was just eaten up with arthritis.

Have a good day, girlfriend, start passing this out. BTW, I also like the spoon theory as a follow up

http://www.butyoudontlooksick.com/articles/written-by-christine/the...

As our buddy JC says, "stay strong"!!

Love and hugs,

SK

Hi enuf - You pointed out something that is SO true! I do feel guilty and sad, as you say, because I sometimes compare my lifestyle to others that are really healthy. All Linda has known, so far, in her life, is good health, a good lifestyle, wonderful kids and a great husband. I am happy for her - but I sure wish it could be me sometimes, you know? I have grown very protective and defensive about my illnesses I find myself sometimes wrapping a 'shield' around myself so that no one can get through and I don't have to explain my illnesses. It's sort of saying to people, 'leave me alone.' I guess this is a defense mode I get into. I can't help it - because of all I have been through with unbelievably callous people, I strike out. I don't physically, but verbally I do. Thank you for your support!1 Hugs!! Laurie

Hi albedo - Everyone that has answered my post do agree that Linda will never understand. Your suggestion to 'play it cool' for the upcoming wedding, is exactly what I am going to do. I want my son, Jason to have a beautiful time at his wedding and I am determined to push everything else aside, and just let go of it! Thanks, Hugs! Laurie

Hi Blondie - I am so sorry you are hurting. I find that if I 'push' myself even just little bit, I pay the price in the end with an awful lot of pain. You clean like I do! (Smile) I used to be able to just zip through the house and clean everything just perfect, do the laundry, change the bedsheets and so on, all in one day and still have energy left over to pursue something else. Now, I allow myself three days to finish everything. I have the tendency to be very hard on myself when I can't accomplish something quickly like I used to. However, through all the years that I have had Fibro, I have learned more and more to be patient with myself and to understand that it isn't my fault. My ex-husband used to make me feel horribly guilty because of what I was going through. He was extremely toxic and just about destroyed me, It took a couple of years to bring my self-worth and confidence back up. Although I am in pain everyday - I love my life right now, being on my own and just doing what I want to do and not have to answer to anyone anymore. I am SO grateful for this website and I have only been a member for about 2 weeks now. I can feel a change in me already, knowing I am not alone with the Fibro. I feel optimistic when I get up in them morning, knowing I can get to my computer and get involved with people who know what I go through. This has been a HUGE plus in my life!! Hugs, Laurie

Hi Laurie, I understand exactly what you're talking about! I just sent an email to a friend of mine who is rather clingy and didn't understand why I can't hang out with her more often. I just told her that I have several invisable disabilities and that I have to juggle between, taking care of myself, being a fulltime student, making time for my friends, and also time for part time work, and homework. I told her that I have friends that I may talk to only twice a year but that we know that if either of us need something we'll be there for each other. What I also did is sent her the email of why we hurt from head to toe and she sent me an email back saying that she didn't know how devastating fibromyalgia could be. I've also have several people who say they will pray that I'll get better soon. I also have a nurse from my health insurance company who wants me to walk 30 minutes three days a week and then up to five days a week in six months. I will be calling her to tell her that this is very unrealistic and she needs to study up on fibromyalgia! I don't feel that I owe anyone an explanation and I am getting fed up with people that project there feelings onto me! I have a special friend who has had junvenile rhuematoid arthritist since she was a child. I share what's going on with me and vice versa and feel totally accepted and understood by her. Even the disability consulor at school had to be told that yes I have fibromyalgia and sometimes I have good days and sometimes I have bad days more often than not but it's the nature of the disease and left it at that. I know how frustrating you feel Laurie by just know that we are here for you and that we support you in doing whatever you need to do to take care of yourself. I also think that if people can't except the fact that you have a invisible illness than maybe it's time to move on from those relationships if they're just bringing you down. I know that it's difficult when it's your in laws to be but I'm glad that you blasted Linda and I feel she deserved it! I accept you for being who you are and where your at in any given moment good or bad! Please hang in there:)

Hi Cinnamin - I agree with everything that you have said! It's totally how I feel. Other than the obligatory Holidays where we all get together, I will pull away from Linda after the wedding. Since she is going to be in my family and vice versa, I have to accept that I will see her occasionally. I absolutely appreciate all the support I get here. It is just amaziing how far I have come, mentally, since I joined the group. Thank you!! Laurie

You're Welcome Laurie! Good Luck!

This woman is just angry that she has to go in debt to pay for a wedding that clearly they really cannot afford nor should their daughter expect it of them. So she is taking it out on you.

One thing i have learned, is that people who really care about you, you never need to explain about your disease nor should they even go there. It is your life, your private business. Do you ask them about their fiances and why they are going back to work and in debt? Nope because it would be rude and inconsiderate.

Well she is crossing those same kind of boundaries with you. I really hope that you have some insurance that includes counseling or if your pastor has degree in it maybe the can help you to understand about setting healthy boundaries.

I have had lupus since the 80's and most likely before that...one thing no one has ever question since i was diagnosed was if i was really sick enough to stop work or not. Most thought i went on too long..and i have even been thinking if i can find a way to move closer to my old job....i know they take me back even for just one day a week...or few days per month. Not sure how realistic is on my part...but i miss my job and co workers and friends down there so much.

I Hope that your son and this young woman are having some kind of pre marriage counseling or he might end up with a young woman who is going to expect him to keep her in lifestyle he cannot afford just yet. I realize this is his personal affairs and you cannot get involved.

I get that majority of people may say things that could hurt one's feelings but i feel most are coming out of sincerity of truly caring about genuinely helping me or others.

But this woman...she is just mean and angry and i would stay away from her. Get counseling....or think of some come backs the next time she brings up about them working for the wedding...like just say 'why?' lol!

so it is not you...it is her and please try to see that....and promise yourself that from now on...you are not going to explain about fibro and how it effects you unless you chose too. If they press for how..just change the subject or say you know right now i am tired and really rather not..but you can go to Wikipedia or what ever site..you like, and read about it.

Just put it back on them to educate themselves it they really care. i really wish you the best and hope you believe in yourself and feel validated in your own self about the truth how sick you really are on daily basis! You are and you do know it!!