I don't know if I should tell friends and family that I have fibro

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Oct 8, 2015
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DX FIBRO
Diagnosis
05/2015
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IL
I'm not ashamed of having an illness, but I don't want to be treated differently because of it. I'm afraid of a few things happening, for example dumb advice and general ignorance, afraid of pity, also worry about people thinking fibromyalgia is fake or that i'm exagerating symptoms. My boyfriend of 10 years is the only person that knows right now.

How did you decide who to tell and did people treat you differently?
 
Well now. It's like this, there comes a point when weather it's a flare or u just hurt, that u find at some point you have to tell ppl.
Crying off let's say for a friends night out.might be seen as you can't be assed.when really your in so much pain u can't face it.
Your find out who real friends are btw. Some might get the hump and fly away. But ask yourself if there true friends they will support u.
It's the same as family.u can't always make ppl understand but u can stand tall and say I'm sick deal with it.x
 
morning, needfibrorelief. i totally get not wanting to tell people, not wanting to be seen as different. but like forgetmenot said, there come the days where you just can't do anything, and you have to let people know why. yes, you get a lot of bonehead and anecdotal advice (my cousin's uncle's siter's neighbour had that but she cured it by only eating red food and drinking a tea made of beaver scrotum) and some people won't get it (suck it up. you just need to get moving, blah, blah, blah). but your true friends and family will be there for you. :)
 
you will need help and support in the future.

those that can help need to know. if they cant help, they dont need to know.

your pains,diagnosis, and drugs are all what you talk to the doctor about not your family and friends.
 
For me, it wasn't really a choice. It took so long to get a diagnosis, all the while in very obvious pain, that everyone knew and kept asking whether we knew why yet. I still try not to talk about it too much, but I can't just blow off people who care enough to ask
 
I'm in the same boat as CaptainMorgan. Everyone saw me succumb to an intense flare and wanted to know the diagnosis.

I've only told a few people that I really trust at work. Sometimes people ask about it. I usually tell them I have nerve pain.

My personal life is a different story. I have chosen to be open with my friends and family. I did a round of ill founded advice from a few people, but that has passed now. One friendship blew up spectacularly. Other friendships have rekindled.

One thing I have needed to learn to do is accept help that is offered graciously. This isn't always easy for me. I try to remember that fibromyalgia makes everyone feel helpless, not just me. Allowing the people who care about me to help me when I need it helps them cope.
 
When u talk fibro with your family. They will think its all in your head. They will laugh. My brother is a doctor. He think fibro is a fake. What a day.
 
brahmatorry, I brought up my symptoms to family when they first started 6 years ago. A few months after I brought up my health issues, they said that they believed symptoms were all in my head. Now that I'm diagnosed, I probably won't tell them since I'm sure they would think I'm crazy. After dealing with their response years ago, this makes me not want to tell anyone. What's the point of being sick and dealing with people making me feel even worse emotionally?
 
I asked my Dr. That very same ? All I get is get over it. But my Dr. KNOWS IT'S REAL, THAT'S ALL I NEED TO KNOW. IT SEAMED LIKE THE PENDULUM SWAN REAL HARD IN ONE DIRECTION FOR ME, I STUDIED WATCHED EVERY U TUBE, YOU NAME IT, I STILL GET THE "look". I would tell them yes, but if you already know they won't encourage you then don't bother.
 
Even my parents think its not real and its all in my head....my lifestyle...if i walked more i would get going and the pain and fatigue would go away! If only...the last conversation we had my dad said i hadn't tried hard enough ..well after 8 years i bloomin well have!

He has ME/ Chronic fatigue and pain took early retirement at 49 and we all know about how awful he feels and help as much as possible...yet somehow mine isn't real......strangely mine started age 47....i didn't know it had an hereditary component.

I don't tell people who don't need to know.
.
 
I was a busy professional, working 12+ hour days, when I was struck suddenly. I'd not only been doing my paid job, but was also producing a children's book I'd written and selling it at a craft fair. I hit bottom that weekend, so exhausted that I was sure I was dying. Months later, I walked out on my job because of stress, complete exhaustion, and so much pain that I couldn't take it anymore. My family thought it was temporary, apparently, and even numerous doctors diagnoses (primary care, two rheumatologists, psychiatrist, physical therapist, and too many others to remember) did not change their perceptions that I just quit. I ask them sometimes, when its obvious that they think I'm 'mental,' why a woman who worked for 40+ years in challenging jobs, earned a degree at the age of 45, raised two children alone, would suddenly 'claim' disability?

They have no answer. But they also have not bothered to research fibro or RA or other autoimmune diseases I've been diagnosed with since 2004. I do not talk about my illnesses, except when I'm in extreme distress. My mother rolls her eyes if I mention pain, and immediately starts talking about how bad her knee hurts. My husband tells me to "get out! Go somewhere!" I get daily lectures from him about exercising. (Not that he does, either). Neither understands, and to be honest, they don't want to. Maybe they are in denial, but that helps, HOW?

I understand how you all feel, with your nearest and dearest refusing to accept your diagnosis, refusing to understand, and saying you're crazy. I remind my family that I have a psychiatrist who says that I'm not crazy; just in pain, which leads to depression and anxiety. And then, because I cannot stand dealing with people who don't care and don't have a clue, I ask them: "Do you have a psychiatrist?"

That always leads to a retreat. Not that it helps.

I was always the 'bad kid' in my family of origin. I wonder how many of us fit that profile?
 
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