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LivetoErr

Distinguished member
Joined
Jan 15, 2014
Messages
137
Reason
DX FIBRO
Diagnosis
06/2012
Country
CA
State
AB
I've had autoimmune issues since I was 8 years old. I'm 34 now, so I've been 'sick' longer than I haven't been. It's a way of life and I can hide it pretty darn well.

My parents have retired in Mexico and I spend, at least, the winters there, with them. The stable and not cold weather makes a huge difference on my pain levels.

On Thursday, a friend's family members came to visit, as their aunt, who is down here for 3 weeks visiting her son, was turning 88 Saturday (yesterday).

On Friday, we took them to the beach. We go three times a week to run our dogs. I had some in my car and my parents had some in their car. One of the girls, in my moms car, asked what I did for a living. I'm not entirely sure what my mom answered but the girls response was, "it must be nice living like you're on a permanent vacation". My mom explained that I was on somewhat of a disability and that was the end of the conversation.

Yesterday, I went over to the friends house because I was going to be playing chauffeur. We had to wait around for some stuff to happen before we headed into town. The girl started asking me questions which I answered. At the end of everything, she said it to me, that it must be nice to live like you're always on vacation. It took me less than a second to reply, "I'd much rather not be sick and able to work for a living". She really didn't know how to respond to that.

I'm just so sick of the 'but you don't look sick attitude' of some people. It would have been fine, if the girl left it at her conversation with my mom. My friend didn't explain the full extent of what goes on with me, so it's understandable she had some questions. However, once my mom told her, that should have been the end of those comments.

I'm more than happy to explain what I go through, what I have and how I feel. Just don't tell me I'm on a vacation because I don't work. I don't live in Mexico 24/7 but, if I can escape the yo-yo like weather of where I live, why wouldn't I?
 

Corvid

Distinguished member
Joined
Dec 21, 2013
Messages
101
Diagnosis
06/2012
Country
US
State
**
Some people don't get it, but want to understand and make an effort to understand. Some people don't get it and don't get that they don't get it. Some people don't care enough even to notice other people.

The first kind I'll do what I can to educate and inform. The second kind I'll sometimes try to flip the light switch on in their dark heads but am not surprised when they remain clueless. The third kind I try to avoid because life's too short to try to reason with narcissists.

I don't know which kind your friend's girl was, but I'm sorry that she has no clue what she's saying or how hurtful it was for you to hear. Just keep doing what's best for you (like escaping Canada for Mexico in winter) and don't let other people get you down.
 

mariposa

Senior member
Joined
Apr 19, 2013
Messages
459
Diagnosis
00/0000
Country
US
State
PA
Some people don't get it, but want to understand and make an effort to understand. Some people don't get it and don't get that they don't get it. Some people don't care enough even to notice other people.

You are *so* right about this... and that's definitely a "quotable quote" there. I would also ignore that last group you listed. The first group is worth trying to educate because there's really no good reason to think they should understand something 100% that they haven't experienced themselves.

The second group is sometimes a lost cause because it just takes too much effort to try to get them to understand.
 

LivetoErr

Distinguished member
Joined
Jan 15, 2014
Messages
137
Reason
DX FIBRO
Diagnosis
06/2012
Country
CA
State
AB
Haha, I have to agree with you there. There are some that aren't worth wasting your time on. I imagine this girl was the latter.

Saturday night I woke up at 5 am feeling terrible. I had the worst upset stomach. I thought it was indigestion so I got up and took a Pepcid AC. About a half hour later, I was vomiting. I felt better so I fell back asleep. Then I woke up again, at 7, needing to vomit. I couldn't stand up without feeling like I was going to hurl.

I was supposed to go with my friend and everyone else to town. My friend has a time share at a beach resort so they were planning a day of laying around by the pool. I called her and said I couldn't go. I was happy and sad about that. I really wanted to swim in a pool but I would have needed a steady supply of Benadryl for the sun. When I called, she said I sounded terrible and I had to rest. I didn't get out of bed all day. Even though, I wasn't vomiting anymore, I felt like I was hit by a truck. My body ached everywhere.

Later, my friend told me that everyone felt kind of off that day. The girl who didn't get it asked my friend why I was so much worse than everyone else. My friend tried to explain to her that with my condition, things just hit me harder. It sounded like she still didn't get it. Oh well, she's gone back home now so, I no longer have to explain myself to anyone. That is, until the next one crosses my path. ;)

It just struck me because I've never met someone who asked someone something about me, was answered and then turned around and asked me. I'm quite happy to explain my issues to anyone but sometimes you just have to shake your head and carry on.
 

wander_n_wonder

Active member
Joined
Sep 16, 2013
Messages
74
Diagnosis
00/0000
Country
PH
State
Manila
It is usually easier for people to make their own judgments without any basis. That's usually much easier to do as compared to having to sympathize and empathize with another person. If you do encounter people like this, just ignore them. It's not worth spending time on. You have better things to worry about.
 

jlo86

Member
Joined
Oct 25, 2013
Messages
17
Reason
DX FIBRO
Diagnosis
07/2013
Country
US
State
Maryland
Ugh, I hate when that happens. I'm so sorry you had to go through that. The assistant at my pt doesn't get my condition at all and I almost asked her to look it up one time because she's so not understanding. She's always asking why I'm tired and getting frustrated at me for being slow. Also, even my rheumy was surprised that I don't work right now! Everyone who asks me what I do doesn't understand why Fibro prevents me from working. I feel like shouting at them, "You try having this and working, then we'll talk!" But yea, unless people go online and read up on all the symptoms of Fibro, they can't get it. Even then they might not.
 

LivetoErr

Distinguished member
Joined
Jan 15, 2014
Messages
137
Reason
DX FIBRO
Diagnosis
06/2012
Country
CA
State
AB
You know, even though my family is supportive, they don't understand the whole always tired thing. My doctor swears that it is because I sleep too much. Except I don't; if I go to bed before midnight I don't sleep through the night. I wake up every hour and spend a few minutes trying to get back to sleep. That's not restful sleep. However, if I'm going to bed after midnight I can't get up at 7 am and be refreshed for the day. I also get my best sleep between 5 am and 10 am. I'm not restless during those hours. It seems if I'm sleeping in until 10 my day is gone. I can't get anything started or done. It's a viscous cycle.

I've only recently begun realizing how slow I am at things. I have been listening to people talk about how long it took them to do something and realized it takes me double sometimes triple the amount of time. It's depressing. I wish people understood that what is easy for them might not be easy for someone else. Surely, they're not perfect at everything and struggle with some things. Oh well, my motto is treat people how I would want to be treated and don't judge others.

In all honesty, it took my mom breaking her foot to realize how hard it was for me when I broke my foot (and they'd gone away leaving me to look after two large dogs). Then it took my father being in a very serious car accident to know what it's like to hurt all the time. They're much more appreciative of what I can do and don't worry, so much, about what I can't. However, I wouldn't wish what happened to my dad on anyone. He's lucky to be alive. He was in a '59 Oldsmobile Super 88 and that's what saved him. He broke his shoulder, his cheek bones, his back and his pelvis at age 65. It forced him into retirement so, at least he can live without working, unlike some of us.
 

jlo86

Member
Joined
Oct 25, 2013
Messages
17
Reason
DX FIBRO
Diagnosis
07/2013
Country
US
State
Maryland
I totally sleep the same hours. I go to sleep around 10, wake up multiple times a night, and then wake up around 10am. Even then I don't feel refreshed, I'm still tired.
 

jessee

New member
Joined
Feb 16, 2014
Messages
3
Reason
DX FIBRO
Diagnosis
04/2003
Country
US
State
OH
I understand and empathize with you. I have multiple autoimmune disorders that cause many little annoying symptoms. I think I do a decent job at "sucking it up" and working through the pain. I still try to run a normal lifestyle as much as possible, but some days it's really hard. Now that I am almost 40, having fibro for over ten years, it's getting harder to live a normal lifestyle. I do work a full time job on my feet in a Pediatric office, have four kids and volunteer at church/school. To make matters worse, I live in Ohio which has crazy unstable weather. The cold bothers me the most and some of the rain. This was the worst winter for me yet. I get little to no support or understanding at work or home. Really no friends or anyone understands. That makes dealing with this so much harder, especially when loved ones even look at you as weak or that there really isn't anything wrong. But I do recognize that other people are not my savior. I have a Savior in whom I seek refuge. But I also know that I am in charge of my own happiness and how I choose my quality of life. It's better to do your best to let what others think or say about you to roll off of you as much as possible. It's not easy for sure. It seems you do have a good support system, so that hopefully makes you feel a little more empowered. Thank you for sharing.
 

lisac

New member
Joined
Feb 15, 2014
Messages
1
Reason
DX FIBRO
Diagnosis
1/2012
Country
US
State
SC
Hey there, i am new here and had to speak up on this issue. I completely understand how you feel. I am a single mom of 2 kids ages 14 and 16 and Its bad enough to be treated like this from everyone else, you can at least get away from them, but my kids constantly tell me how lazy and pathetic i am because i dont work and feel so bad all the time. I was diagnosed with breast cancer year and half ago and went thru 2 horrible surgeries and need another still which i am afraid to do for fear of making my fibro worse, but they cant understand why i hurt and feel so bad still since i " dont have cancer amymore". I cant get away from my kids and this just kills me. To top it off i just had a disability hearing on friday and all the judge wanted to talk about was pain medicine and was i addicted and on and on....i have pretty much stopped going to doctors because i cant handle being accused of being a druggie piece of trash one more time . Omg......guess i for off topic sorry , anyway just wanted to say i know what you mean and it sucks! All we can do is the best we know how to do in these situations, even though it most times does no good .
 

LivetoErr

Distinguished member
Joined
Jan 15, 2014
Messages
137
Reason
DX FIBRO
Diagnosis
06/2012
Country
CA
State
AB
Hey there, i am new here and had to speak up on this issue. I completely understand how you feel. I am a single mom of 2 kids ages 14 and 16 and Its bad enough to be treated like this from everyone else, you can at least get away from them, but my kids constantly tell me how lazy and pathetic i am because i dont work and feel so bad all the time. I was diagnosed with breast cancer year and half ago and went thru 2 horrible surgeries and need another still which i am afraid to do for fear of making my fibro worse, but they cant understand why i hurt and feel so bad still since i " dont have cancer amymore". I cant get away from my kids and this just kills me. To top it off i just had a disability hearing on friday and all the judge wanted to talk about was pain medicine and was i addicted and on and on....i have pretty much stopped going to doctors because i cant handle being accused of being a druggie piece of trash one more time . Omg......guess i for off topic sorry , anyway just wanted to say i know what you mean and it sucks! All we can do is the best we know how to do in these situations, even though it most times does no good .

Oh my, your kids treat you like that? Wow. I wish I could say something that would help but I don't know what would.

I don't understand the disability people. First you're not on enough drugs to be sick (basically what they said to me) then you're on to many. What exactly do they want?
 

Chrispy93

Active member
Joined
Aug 20, 2013
Messages
61
Reason
DX FIBRO
Diagnosis
00/2007
Country
US
State
Rhode Island
i wanted coment on Corvid's eloquent quote "Some people don't get it, but want to understand and make an effort to understand. Some people don't get it and don't get that they don't get it. Some people don't care enough even to notice other people." and say, but what if it's your family that doesn't get it? on one hand i feel like they understand but then the comments or questions come and i realize they don't get it.
 
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