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patricia mcginly

New member
Joined
Jul 21, 2015
Messages
1
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
I am wondering what I can say to so called friends when they continue to "poo-poo" my condition, telling me i should keep going, their aches & pains don't keep them down. Today has been spent in bed sleeping most of the day. I was supposed to drive myself & a friend to the beach for the day. 4 hours in the car. Had to cancel as today was bad, pain & exhaustian. I want to let go of everyone because they think I'm fine and I'm not. What do I say to them? They don't get it and my feelings are beyond being hurt. They think I'd rather be home in bed than spending the day on the beach? They have known I have fibromyalgia for years yet I still get grief from them. But you were fine last week, push yourself. I could cry, I want new caring understanding friends. Why can't they ever say " take it easy, hope you feel better tomorrow. I am at the point of staying away from everyone. My mother was kind to me and tried to understand but she died 7 years ago.i am grateful for my pets! I had 1 friend years ago who was understanding because her father had fibromyalgia and she saw how he suffered and that it is real.
 

PattiD

Active member
Joined
Jun 23, 2015
Messages
59
Reason
DX FIBRO
Diagnosis
06/2015
Country
US
State
FL
Hi Patricia. I understand how you feel. I've lost a lot of so called "friends". My former boss gave me an ultimatum and said if I wasn't better by January (this year) he would let me go. I and my husband knew that wasn't going to happen. I do have real friends. Some people can't handle the idea that their friend has an illness that is invisible. I know its a terrible way to find out who your friends really are but you will find other friends.
The hardest thing I found is it is hard to be patient with them. Just remember you have friends here.
Gentle hugs to you :)
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
I e said this before and il say it again. Ask them if they have ever had a bad headache ,then ask them to prove it.ask them why they believe in Parkinson's when there no blood test In The world to prove that, the same goes for MS.then ask them why there happy to beilive in these other illness but not yours.
 

Lyndsey

Active member
Joined
Dec 18, 2014
Messages
89
Reason
DX FIBRO
Diagnosis
04/2014
Country
CA
State
British Columbia
Hi Patricia,

I completely hear what you are saying and understand completely as well. I am lucky to have a supportive family, but I have the same feeling when it comes to friends, even when they are trying to be understanding of my health and situation. It is so hard for others to sympathize with our illness due to the fact that it is invisible. I don't know about you, but for me this is probably my biggest frustration. Not that I am wanting to look ill, but when you don't appear to be sick it is hard for others to understand the gravity of how bad we actually feel on a daily basis. I feel like a truck has hit me most days and want to curl up into a ball. I have also become a recluse and don't like to see people either. I feel for you and everyone else who is going through the same thing, it truly is a hard disease to have.

I am so sorry to hear that you lost your mom, that must have been so hard for you, especially given that it sounds like she was your main support system. I can't imagine losing my mom, she is also my main support system. Using this forum to connect with others in similar situations, who truly understand what you are feeling is a good start and I encourage you to use it more and more (sorry not sure if your new to it or not). When I am overly frustrated I always come here and then leave feeling a little better. We are all very supportive to one another on here and I totally get it.

Don't feel bad about needing to rest, we all do and it is certainly not the same as what your friends are describing as "aches and pains". II have migraines every single day, not break from it and the body pain, resting doesn't even help most of the time. I always think to myself if only people could experience a day in the life of us. I am slowly learning to do the same thing. I have a tendency to push myself to avoid letting others down and worrying what they think constantly, but we all need to take care of ourselves first and foremost. Your true friends should understand, and support the fact that you need rest to get through the day, and some days just cannot do anything.

Something that may be helpful is to send an article explaining what Fibromayalgia is and how it affects you day to day. Maybe seeing this would open their eyes to what you are going through, symptoms ect.

Thoughts and prayers out to you and if you ever need to talk don't hesitate to private message me anytime.

Lyndsey
 

Leana

Member
Joined
Jul 21, 2015
Messages
12
Reason
DX FIBRO
Diagnosis
01/2015
Country
CA
State
Manitoba
Everything you said here is exactly how I feel every day of my life


Hi Patricia,

I completely hear what you are saying and understand completely as well. I am lucky to have a supportive family, but I have the same feeling when it comes to friends, even when they are trying to be understanding of my health and situation. It is so hard for others to sympathize with our illness due to the fact that it is invisible. I don't know about you, but for me this is probably my biggest frustration. Not that I am wanting to look ill, but when you don't appear to be sick it is hard for others to understand the gravity of how bad we actually feel on a daily basis. I feel like a truck has hit me most days and want to curl up into a ball. I have also become a recluse and don't like to see people either. I feel for you and everyone else who is going through the same thing, it truly is a hard disease to have.

Using this forum to connect with others in similar situations, who truly understand what you are feeling is a good start and I encourage you to use it more and more (sorry not sure if your new to it or not). When I am overly frustrated I always come here and then leave feeling a little better. We are all very supportive to one another on here and I totally get it.

Don't feel bad about needing to rest, we all do and it is certainly not the same as what your friends are describing as "aches and pains". II have migraines every single day, not break from it and the body pain, resting doesn't even help most of the time. I always think to myself if only people could experience a day in the life of us. I am slowly learning to do the same thing. I have a tendency to push myself to avoid letting others down and worrying what they think constantly, but we all need to take care of ourselves first and foremost. Your true friends should understand, and support the fact that you need rest to get through the day, and some days just cannot do anything.

Something that may be helpful is to send an article explaining what Fibromayalgia is and how it affects you day to day. Maybe seeing this would open their eyes to what you are going through, symptoms ect.

Thoughts and prayers out to you and if you ever need to talk don't hesitate to private message me anytime.

Lyndsey
 

Leana

Member
Joined
Jul 21, 2015
Messages
12
Reason
DX FIBRO
Diagnosis
01/2015
Country
CA
State
Manitoba
Everything you said here is exactly how I feel every day of my life


Hi Patricia,

I completely hear what you are saying and understand completely as well. I am lucky to have a supportive family, but I have the same feeling when it comes to friends, even when they are trying to be understanding of my health and situation. It is so hard for others to sympathize with our illness due to the fact that it is invisible. I don't know about you, but for me this is probably my biggest frustration. Not that I am wanting to look ill, but when you don't appear to be sick it is hard for others to understand the gravity of how bad we actually feel on a daily basis. I feel like a truck has hit me most days and want to curl up into a ball. I have also become a recluse and don't like to see people either. I feel for you and everyone else who is going through the same thing, it truly is a hard disease to have.

. Using this forum to connect with others in similar situations, who truly understand what you are feeling is a good start and I encourage you to use it more and more (sorry not sure if your new to it or not). When I am overly frustrated I always come here and then leave feeling a little better. We are all very supportive to one another on here and I totally get it.

Don't feel bad about needing to rest, we all do and it is certainly not the same as what your friends are describing as "aches and pains". II have migraines every single day, not break from it and the body pain, resting doesn't even help most of the time. I always think to myself if only people could experience a day in the life of us. I am slowly learning to do the same thing. I have a tendency to push myself to avoid letting others down and worrying what they think constantly, but we all need to take care of ourselves first and foremost. Your true friends should understand, and support the fact that you need rest to get through the day, and some days just cannot do anything.

Something that may be helpful is to send an article explaining what Fibromayalgia is and how it affects you day to day. Maybe seeing this would open their eyes to what you are going through, symptoms ect.

Thoughts and prayers out to you and if you ever need to talk don't hesitate to private message me anytime.

Lyndsey
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
US
State
TX
hi Patrica,

I wanted to tell you there is a post i put out there that explains friends and family and how to deal with them and explaining how your pain works.
The posts are "what is fibromyalgia" and the other one is "starting a daily log book and why it helps".

One will tell you about doctors and the other will tell you about a process i used to explain my pain, called the clothes pin.

your friends cant help you and they think you are bringing them down, so the will begin to avoid you.

you cant see your pain like you cant see they have a headache.

Read the posts and try the clothes pins on them. if they are not willing to try, then they are not friends and you are just banging your head on a brick wall.

they knew you had fibro and that making plans with you it could change by the day. they seam to not mind hurting your feelings and speaking on something the have no knowledge about. they have made no effort to understand your illness.

it's up to you to decide if they are helping you or hurting you. friends come and go thats part of life.
when you start stressing about friends that make no effort then you need to leave them as they are just adding to your pain.
life is short and them causing you stress and pain is not worth it.
 

Zolisindigo

Active member
Joined
Aug 8, 2015
Messages
37
Reason
DX FIBRO
Diagnosis
01/2012
Country
RU
State
Moscow
Patricia,hi!
Be sure that friends which are truly yours will stay with you despite of illness and other difficulties. That means that everything changes and I am sure you will meet another wonderful people! I also lost many of my friends, I understand that we are too different to swim together in this Big Ocean called Life. I let them go as I hope that will find new and they will accept me as I am. I also feel myself very lonely and even desperate from time to time but it doesn't mean that such feeling will stay with me always! You are not alone! Hug you!
 
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