People say I’m lazy, that I make up the pain, etc. but how can I fake kidney cysts, liver cysts, stones, nodules, meniangiomas, and depression? I feel that no one understands what i go through every hour of each day. I take cymbalta, hydromorphone, vitamin D3, B12, nucynta, prozac, and still people dont get it
Hello Daniel,
Nice to see you posting 
and nobody knows what your going through only yourself and members like we all who suffer the same but in different degree's...the trouble with this disease is that it's classed as the hidden disease and although what your going through carries such alot, if you look ok on the outside nobody believes you.
We've got so many members where friends, family and even partners don't believe them, so your truly not on your own for sure.
You want to get people who don't understand you to read this link i'm attaching for you and it covers all aspects on Lupus...some members have emailed it to other's, hoping they'll read it and finally understand what they're going through...i count my blessings daily that i have such a caring hubby who stands by me with whatever i'm going through.
http://forum.lifewithlupus.org/forum/topics/full-information-covering....
Terri :)
Hi Daniel,
I'm sorry you have to deal with difficult people. Fortunately, you are among others who understand how you feel. We are here for you...
I completely understand. I’ve had lupus for many years, but it’s really gotten worse in the last five. My therapist suggested I email my family and friends different articles and information I read about my disease to help them understand. I know no one really gets it except for other sufferers, but I’m trying to help my family and friends understand a little better. Hang in there. I know how difficult it is.
I think everyone on this site can relate to how you feel. I have gotten to a point that I even question myself sometimes. Like somehow it’s all in my head…That is why I joined this site. I have found that hearing other people’s stories, so close to my own, helps keep me from falling into a dangerous depression. It is hard for people to understand something they have not experienced firsthand, especially when they can’t “see” it. Hang in there! You are in good company : )
I framed the spoon poster,"you don’t look sick"and I have it hanging for all who come into my home …it’s a really good way to explain what lupus does to you…celeste
Hello Daniel,
When you have time or are able to...an update on how you are would be nice :)
I have to be honest that a few years ago that was me. I had no understanding and had not even heard of the symptoms of lupus only that it was a “lazy persons sickness”. I then came a crossed The spoon Theory and was so in awe that something like that could be real. I very dear friend was diagnosed with lupus and I knew she was not lazy, she in fact was a woman who helped me and went out of my way for me when I was pretty much alone. Now 7 years later how things have changed. I am still waiting on diagnosis but my allergist has sent me for an array of blood tests and well…I am trying to figure it all out. I am trying to learn not to judge or get angry at those who say lupus is a fake disease. I’m trying to pitty them and pray that they are brought out of this self absorbed narcissistic society that we live in. I try to remember its not their fault they are only a victim of their own ignorance…sometimes that doesn’t help me to vent my frustration and call them every name I can think of while my boyfriend sits patiently and let’s me get it out but little by little I will learn. There is always something to learn from everything. Don’t ever feel bad for venting though but after you vent try and learn. Even if its learning that we need more people to write articles like the spoon theory or that we need to say a prayer for those who doubt. I dot have all the answers but it doesn’t hurt to learn 
ps I pray you have a week full of energy, a break from any pain and that for a brief time you can feel how you used to feel. Keep your head up and keep on treking! We are given our trials because we have something in us that although we might not see yet, it is there none the less. Big hug–
"Nothing's as bad as ignorance", I always say to myself. My family is very smart, with all kind of professionals. It still took me a while to get them to understand. There were times when I showed them test results to make them believe.
Although Thomas was only one disciple, there are SO many around us it is unbelievable.
Thank you all of you! I appreciate the encouraging words. To answer a few questions: Today I only dealt with joint pain and some exhaustion. But yesterday was a really bad day, only getting out of bed to pick up my son from school. I actually have skin discoloration on my face ( the infamous butterfly mark) on my hands, and even on the more private areas. The pain that bothers me the most is the kidney ( or perhaps even liver) pain that i feel every day. Most days my body shuts down around 3. As to why people dont understand me or my sympyoms… I wish i knew why, i just dont have an answer on that. Btw, I live in the orlando area, and the weather certainly doesnt help!
How does each of you deal with the depression? I’m sick of the side effects of most anti depressants
Thank you, thank you, thank you! Just in case I forgot to thank you personally Terri.
Tez_20 said:
Hello Daniel,
Nice to see you posting
and nobody knows what your going through only yourself and members like we all who suffer the same but in different degree's...the trouble with this disease is that it's classed as the hidden disease and although what your going through carries such alot, if you look ok on the outside nobody believes you.
We've got so many members where friends, family and even partners don't believe them, so your truly not on your own for sure.
You want to get people who don't understand you to read this link i'm attaching for you and it covers all aspects on Lupus...some members have emailed it to other's, hoping they'll read it and finally understand what they're going through...i count my blessings daily that i have such a caring hubby who stands by me with whatever i'm going through.
http://forum.lifewithlupus.org/forum/topics/full-information-covering....
Terri :)
Thank you for your encouraging words. Do you know of any videos made specifically for helping family members understand what we go through? I cant tell you how many people have actually come out and labeled me a liar saying there's no way I can feel the way I do since I dont have cancer or HIV or any other well known fatal disease. My own wife tells me how her mom worked 2 jobs even as she was dying of cancer. People just dont get it... or am I overreacting? I wish there was something out there to make it easier for people to visualize what we suffer
Kim said:
I completely understand. I've had lupus for many years, but it's really gotten worse in the last five. My therapist suggested I email my family and friends different articles and information I read about my disease to help them understand. I know no one really gets it except for other sufferers, but I'm trying to help my family and friends understand a little better. Hang in there. I know how difficult it is.
So true! Thank you for your support
TJ said:
I think everyone on this site can relate to how you feel. I have gotten to a point that I even question myself sometimes. Like somehow it's all in my head...That is why I joined this site. I have found that hearing other people's stories, so close to my own, helps keep me from falling into a dangerous depression. It is hard for people to understand something they have not experienced firsthand, especially when they can't "see" it. Hang in there! You are in good company : )
Daniel your welcome and so many members on here can give you the same advice as they've suffered also :)
Daniel Muniz said:
Thank you, thank you, thank you! Just in case I forgot to thank you personally Terri.
Tez_20 said:Hello Daniel,
Nice to see you posting
We've got so many members where friends, family and even partners don't believe them, so your truly not on your own for sure.
You want to get people who don't understand you to read this link i'm attaching for you and it covers all aspects on Lupus...some members have emailed it to other's, hoping they'll read it and finally understand what they're going through...i count my blessings daily that i have such a caring hubby who stands by me with whatever i'm going through.
http://forum.lifewithlupus.org/forum/topics/full-information-covering....
Hi Daniel,
Sorry to hear how your wifes reacting and nobody will ever know what we suffer unless they have it and when she mentions her mom working two jobs with Cancer....my dad had cancer of the lungs and liver for years and never knew, he was always in pain but would never take time off work and when he was made redundant at 63 he saw a specialist was diagnosed and within 2wks he died...people can have cancer and keep going but what a comment to throw at you...sorry for stating this but being your wife you'd think she'd understand better.
Daniel here's several video's to show on Lupus :)
This video highlihts other video's on Lupus also and i hope they help.
http://www.youtube.com/watch?v=YDE8ypkOw5M&feature=share&list=PLA1879410A4CC28B4