I really have started to hate talking about my fibro. I don’t want to tell people about it (even family) because it upsets me to explain it and people don’t understand and that in itself is frustrating. I don’t like being perceived as sick or for people to feel bad for me. Anyone else had this feeling.
Hi Starkjami, I think Stephen Hawking was right when he said “It is a waste of time to be angry about my disability. One has to get on with life and I haven’t done badly. People won’t have time for you if you are always angry or complaining”.
I think we’ve all been angry at one time or another and complained about it. I’ve always had problems explaining fibro as there are things that happen that I don’t understand myself.
I try to remain positive about what’s happening. My friends and family know I have really bad days (been hit by a bus), some ok days, some don’t touch days, and some good days. I don’t talk about it much because I don’t want them to feel bad about it , or want them to feel sorry for me. I’ve had friends complain about a pain they have; then look at me and say I shouldn’t say anything, with what you’re living with. My comment is that pain is pain no matter who suffers from it.
When the’ve wanted more information concerning fibro, I gave them some info on symptoms, although they had usually looked it up on the internet themselves. I’m willing to discuss it if they really want me to but all I really need them to know and understand is if I don’t accept an invitation, or don’t get something done, or have to cancel it’s because I just can’t do it and; sometimes I do need some help. I do have days when they’re less than understanding where I wish they could feel it for fifteen minutes, but these days don’t happen very often, and we all get frustrated with each other once in a while.
I have vented on this forum site, and probably will again because it is a place that people understand, and can relate to what’s happening.
We all deal with the situation differently, and you have to find out what work’s best for you. I have had fibro for a long time, and found that this is the best way for me to live and deal with it.
Over time you’ll find a comfortable way of dealing with it.
Gentle hugs
Thanks guys much appreciated. Hope you’re all well also
Hi Stark,
I get tired of trying to explain it! I think on some level we all feel this way at one time or another. I definitely know that I don't have the same things to talk about as I did when I was out in the world more, and I think that we all tend to withdraw at different times, with different people, different situations.
Well people are able to work, to shop, to go to a dance, to take a vacation, I am close to homebound. An occasional shopping trip with one of my granddaughters, even limited to one store, and I'm nearly ready for the ER, but I go when I can, it doesn't take much for me to over do, sometimes you just have to bite the bullet, pay the price, and live!
Accepting our illness is so multifaceted, with so many layers, so many years. People see the commercials for Lyrica or Enbrel, and think that you should be as well as the people on the commercials, you know, take the Enbrel and go play a round of golf with Phil, that the med makes it all better, so there is so much that just never gets understood, and you just get tired of explaining and 'teaching'!
That's the great thing about the site, you can always come here and feel understood, and it does help to live in the real world, because we know that someone somewhere understands, so we don't need as much understanding from 'the wells'!
Did any of that make sense, or did I just ramble, going in circles? ha!
I hope you get over feeling embarrassed, It's not like this is self induced, that's being pretty tough on yourself! Be good to yourself, you deserve it!
Sending love and hugs,
SK
Thank you SK
Hi Starkjami,
Absolutely! Not only for the reasons you've mentioned, but also because Fibromyalgia has such a stigma attached to it. People automatically think of that 'trash can diagnosis' that they hear about, and that we're lazy, frauds, babies and hypochondriacs.
Hopefully someday soon we'll have more validation that this is a REAL disorder, and we won't feel so embarrassed to admit to it.
Big hugs,
Renie♥
There is literature in the medical world though! I’m a health professional and we learn about it in school and there is literature out there- not see where the disconnect lies. Trouble is you tell friends or family to look it up they’ll stumble upon that crap too :-x
I definitely understand this feeling. I go through it every day honestly. I hate being out in public and having my family randomly ask me, are you in pain? You look tired. Do you need to sit down? It’s sweet that they care, but I also find it extremely embarrassing because I don’t want anyone to know I have fibro and I don’t want my family treating me like a grandmother. I’m still accepting the fact that I have this horrible disease, even though I have had it since I was eight. Maybe I’m still in denial, I’m not sure. But I totally understand what you are saying.
Sorry you’ve been struggling but happy we all have each other !
Hi Stark - there is a fantastic letter that was written a while back - that was to be given to family and friends. It really helps them to understand everything you are going through - so you don't have to explain. Please ask SK to see if she can get it posted for you? It will be SO worth it! Laurie
Thanks Laurie
SK…Laurie said you have a Letter to give to family and friends?
HI STARMJAM IM VERY LUCKY TO HAVE PEOPLE AT WORK AND CHURCH WHO ARE VERY UNDERSTANDING ALL MY FRIENDS AND FAMILY EXCEPT FOR TWO PEOPLE MY DAD AND HIS GIRLFRIEND I TELL EVERYONE ELSE NO THEY ACCEPT IT BUT THEY WONT IVE BEEN NICELY ASKED CANT YOU RUN THE VACUUM IT SAID NO BECAUSE BOTH MY DRS HAVE SAID TO DO WHAT I CAN DO AND DONT WORRY ABOUT WHAT YOU CANT HE SAID IM SMARTER THAN YOUR DRS ID LIKE TO SEE HIM PASS THE ACT AND THEN TO BE A RHEUMATOLOGIST ITS TAKES YEARS AND HE THINKS HES SMARTER THAN THR RRGISTERED DIETICAN ABOUT NUTRITION ITS 7 YEARS TO BECOME A DIETICAN HELL BE 80 IN OCTOBER HED BE AT LEAST 90 JUST FOR THE DR AND ANOTHER 7 FOR THE DIETICAN THATS 97 THE LIFE EXPECTANCY FOR HIS FAMILY IS. 95 HE WONT BE ABLE TO DO BOTH UNLESS BOTH STUDIED CONSECUTIVELY I IGNORE HIM AND THE GIRLFRIEND AS MUCH AS I CAN IM HOME TODAY DIDNT ATTEND CHURCH WORKED LAST NIGHT VERY TIRED NEED TO STAY HOME REST FOR ACTIVITIES MONDAY AND TUESDAY HE DOESNT THINK THE DOG HER NAMES HEIDI NEEDS A FENCED IN BACKYARD SHES AN AUSTRALIAN SHEPARD JUST SMALLER THAN A GERMAN SHEPARD SHE NEEDS ONE I HAVE AN SUSTRALIAN SHEPARD BOOK AND A WEBSITE BOTH SAY LARGE FENCED IN BACKYARD IVE BEEN TAKING HER OUT IN THE BWCKYARD AND STAYING WITH HER THE LAST 2 DAYS SHE LOVES IT IM GOING TO GET THE MONEY TO HIRE DOMEONE TO DO IT ID DO IT MYSELF BUT I CANT PHYSICALLY BUT FOR NOW ITS A HAPPY SLTERNATIVE TO LETTING HER OUT THE FRONT AND BARKING AT EVERYTHING THAT WALKS OR DRIVES BY AND HE LEAVES PAPERTOWEL IN THE KITCHEN SHE GETS THEM AND CHEWS THEM UP AND THRN HE GETS MAD I SAID TO HER HEIDI I USE PAPERTOWEL AT WORK CHURCH HOME I USE IT AND THROW IT AWAY JUST LIKE KLEENEX AND TOILET PAPER USE IT AND THROW IT AWAY SORRY ABOUT THE LONG POST ITS GREAT TO HAVE A GREAT GROUP TO TALK TO I SAY PRAYERS FOR THE GROUP EACH DAY ENJOY THE REST OF YOUR WEEKEND
Hi Starkjami,
I too get sick of explaining my condition to people. I am newly diagnosed with fibro, but have been suffering with psoriatic arthritis for years. The only good thing about the PsA (and it’s not really a good thing!!) is that people can see the actual swelling of the joints. I have actually had to pull my pants leg up at work to show my boss my swollen ankle because he said I was walking fine the day before! I believe I know the letter that SK has. I had printed one and gave it to my boss. He looked at things much differently after reading it. I also gave it to my family members so they had a better understanding. I don’t think people understand that, more than anything, we wish we could be healthy and lead normal lives.
I left my job a month ago, so luckily I don’t have to explain the fibro to them. I probably wouldn’t have even told them since they were so bad about the PsA. My boss said Phil Nicholson seems to be doing just fine, so why was I having such a rough time with it! I told him I don’t have Phil’s doctors or money, maybe that’s why 
Hope things get better for you-hang in there!!
p.s.-get that letter-it will help