Fibro Challenges Online Support Group

My family for the short 22 years of my life so far have always accused me of lying about not feeling well and being sick. Even after hundreds and thousands at this point, of doctors trips every one was treating me as if I was just doing this for attention. In the last 5 years this has has changed to what they are telling me is their frustration about my illnesses, how they continue to get worse, and how there is nothing they can personally do about it. At 17 when the doctors finally started saying that there is definitely something wrong with me but they just didn't know what exactly I had hoped that it would make a difference, but it did not. I am from an extremely codependent family of cubans and italians that have an inability to communicate exactly what they mean and instead use anger and yelling. Two months ago I had sinus surgery and it turned out not to be successful and I have an infection from it now that was worse than before and on so many extra medications to try and fix it in order to have my yearly mri to see if my pituitary adinoma has grown or not and for the doctors to decide once and for all if they are going to remove it to solve all of the symptoms related to that. My whole family says that this process isn't going fast enough and they want me to be better already. In particular my father and middle sister behave as though I'm sick on purpose and I am causing them extra stress and grief and ruining everyone's lives. Has this happened to any one else on their journey to living with this?

This was like reading my own life..I come from a Irish/italian family in my mothers side and I understand.. they dont know how to talk to each other its always your fault andthey really truly dont listen...

i wish i could say this gets better but i have yet to find away to make them understand.. the 3 people in the family that would have made them understand have been long past...

I truly hope they find out whatelse is wrong with you...sounds like you have same things as I as you were growing up.. good luck...welcome to the family... and you are always loved... PM me anytime

Many warm gentle hugs for you. I removed myself from family so I didn't have to take the pain from them anymore. I am so sorry you have no family support. But you have your new MD Junction family. Love River

Hi Terri and welcome to the family!! I am so sorry your family is not being supportive. Unfortunately it's not uncommon with fibro, I often think some of our extended family thinks because they can't see it, it went away or are frustrated because they don't understand that once we have it it's here to stay. There are wonderful, supportive and understanding people here who really do understand what you are going through. If there is anything I can do for you let me know.

Up top here where the forum tabs are click on it and go down to the fibro resources and click on that. There are alot of great letters and articles there that may help you with your family if they are open to it. Ann

Hello Terri, and welcome to the group. I'm really sorry you don't have your family's support. I don't have any family nearby and my kids try to understand my limitation, but my bonus kids just don't want to know or understand. I love them and we get along well, but they were raised a whole different way with that stoic attitude where you never talk about your health problems. So, I just don't mention mine to them. I keep them updated on the hubs heart condition and leave it at that. They don't have a clue about FMS and don't want to it seems. I know they think I am just a slacker, but when they all come to visit now, I let them do most of the work, and I just go lie down when I get to the end of my energies or start to have back spasms. They are now well trained and we have a great time. I don't say anything either, except "gonna lie down for a few, see ya later" which I can tell they are relieved I don't go into why any more. Suits me too.

At least nobody says anything to me about it so that helps. It's like the elephant in the room that everyone tries to ignore. LOL Better to say nothing if you have nothing helpful or sympathetic to say.

big welcoming hugs!

Karen

Welcome, Terri!

Like the others have already said, you have come to a soft place to to find comfort. You can complain, vent, tell us what is wrong, whatever, I think we have heard it all. We all or most of us know what you are going through. A lot of us have kind of let our families go, just so our stress level is down some. Some family members do come around but a lot don't.

I found it better to come here where everyone knows what is going on and give me advice on what to do or just a shoulder to cry on.

We are tough, fibrowarriors, and we are not made of sugar so we don't melt if you cry on us. And don't worry if that old fibro fog takes the words away. We are used to putting sentences together. Spelling too.

If you want to know about a certain thing, there is a box at the top for a search. That will bring up that topic and the post we have already typed.

Gentle hugs,

Debbie

I think most of us have this happen in our lives..its hard to educate the ingnorant..but it reminds me of something I tll my children all the time..you know the truth dont worry what others say..I know its very hard when its you immdiate family..

what I would sugest is leaving lititure around in the bathroom(as someone here suggested) and if you can bring someone with you to the doctor so the doctor can exsplain to them whats going on..chronic pain and fatuige is something that isnt seen so its hard for family and friends to understand it..Im sorry you have to not only face fibro but the doubt it puts in there faces..but remeber you have truth on your side and you know it is fact

Another one here who has faced the same as you! Years of random health issues, nothing too major, but all put together made a rocky road through my life. And never really got the support from my family that I needed at times. I'm afraid to say that the only thing that has stopped my mother from her 'you are too young' comments and her 'who has a worse time of it' competition - was an 11wk stay in hospital last year (not fibro related though). Finally there was something tangible, proven to be significant. She could relate to time in hospital and what I was going through (she has endured almost 30 operations now, so really does 'win' but its NOT a competition!!!!). So finally the comments have stopped, the questions on whether my husband is back at work have stopped and now she just accepts my situation and that I don't like it any more than she likes hers.

Interesting you should say about your sinuses. I had a piece of tooth root lodged in my sinus after a botched dental procedure. It got badly infected and the first operation simply didn't work - the cleared it all out but the tooth was still there and the infection just built up again. Apparently it was all he could do, it was that messy in there. So it took a second operation to get the piece out for good. So yeah, know all about failed sinus ops!!!

Do I have advice for you? Sadly its hard to say! You can give them all the information in the world but if they won't accept it, there is nothing you CAN do. Other than keep yourself safe. Take care of your body and your mental health, learn to say no, find a way to let them know when you need to retreat and rest and find ways to keep your mind calm. You have to find your own 'inner peace' with fibro, meaning that you have to learn to accept it yourself before you can expect others to, and when that happens you learn that it makes no difference what they think, cause YOU are OK and that is all that matters.

Sorry, got a little tacky there at the end. But I do believe that I am finding that inner peace and self acceptance of this condition, and it is making me a far happier person. Well, most of the time anyway!

K

Hi Terri

I know families can be frustrating I come from an Italian/ Spanish background.

My family is very stubborn about my illness as well since they can't see it.I have only been diagnosed with this condition for the last two years.I've been lucky enough to have a great support group of friends and a wonderful wife! To find this web site of great people!

Welcome and !!HUGS!!! to you!

I want to hug every single one of you that have posted. Every single day is hard to get through and I can't imagine having dealt with any of it w/out someone in my corner. I didn't realize how truly blessed I have been in that department. The only ones who thought i was faking was the doctors untill they figured it out. Sometimes I think my friends think i use it as an excuse but I just know they dont understand. I'm so glad that we have this opportunity to come together and support eachother. I came here hoping to find a place exactly like this. I have lots of extra hugs for all of you to have ANY time its needed!