I don't know how old your child is but please don't pretend all the time. I have seen some really bad things happen with children when they had no glimmer of the truth and weren't allowed to grow into the knowledge that people don't always feel good. If your child is very young then the very best of luck raising your little one when you feel so lousy. I know how hard it is and my thoughts and prayers go out to you.
I can’t pretend anymore. I hurt to bad and my kidneys are kicking my butt. Been hospitalized 7 times in the last three months. It’s sad but I usually keep to myself anyway. I do talk to my mom and aunt about it because they have known for going on 20 years. They we’re my team when I found out. Took me for second opinions and so many text due to ITP almost killing me. Don’t be ashamed. You have almost a cancer sentence hun if you really think about it. I havethe hair loss sometimes, nasua and vomitting, severe pain and constantly getting sick. I know I wouldn’t want cancer but we all have extreme issues with this. Don’t beat yourself up. What will happen when it gets as bad as a lot of hospitalizing and stuff? Remember, you never asked for this so don’t let it run you and make you feel embarassed or self conscious. It isn’t whinimg when you are dealing with so much and if anyone says anything negative ask for prayer. Good luck and stay blessed.
I do to, because on the outside they see me and think that nothing is wrong, they don't know of the pain you have constantly, get winded when you try to do thing, I have taken to using a cane and when I stand up for longer times my hands and body starts to shake. Yes my husband has Parkinson and sometimes I wish I had that because out ward he looks to be sick, and it's like my disease don't count.
I feel this way all the time. I think it is just a lot easier to say "I'm okay", than to explain, when most of the time, people ask how you are, but they don't really want to know. With my family, I don't tell them how I'm feeling a lot of the time, because I don't want them to worry. The one person who always has me figured out is my mother. She may not know exactly what is wrong, but she knows me and she believes that I am sick, even if I don't look it. I think the hardest times discussing my chronic illness is with my employer. It is especially hard when my direct supervisor tells me that she doesn't think I can physically do my job any longer. What does she know anyway! She may be right, in a lot of ways, but I don't have much of a choice, in order to take care of my family, and to take care of myself. I don't know if it is of any comfort to you, but I completely understand how you are feeling.
Trisha, I find myself doing the "I'm fine" reply also. When you mentioned saying that to your rheumatologist this week made me do a double take. I did the very same thing with mine this week, as I'm so used to saying "I'm fine". I feel as if people don't believe me when I say I don't feel well or that I'm sick. I need to stop and think twice before answering that question from now on. Thank you for making me realize that....
Trisha said:
I'm honest with my immediate family, then less with my extended family and more private with those outside these relationships. I even caught myself this week with my rheumatologist when he walked into the room and asked how I was... "I'm fine.." then I thought about it, and I said I'm really not fine. I'm not feeling well this week, and was honest. I'm so used to the standard, "I'm fine."
I feel EXACTLY the way you do! If people hear you have cancer the know what that is and sympathize. When you tell someone you have lupus (if you tell them because just going through the explanation is tiring enough!), they just ask a bunch of questions and still don’t understand and because we don’t look sick all the time they give you a look of bewilderment instead of sympathy. It is very frustrating! And you are absolutely right about feeling good one minute andand literally the next minute feeling hortiblehorrible. That’s hard to explain to people too! I’m so glad I have this site to talk to people who completely understand what I’m going through. I helps you not feel alone and crazy! Thanks for your post.
I can’t say that I understand… sorry. I don’t feel motivated to pretend anything. Workplace is one thing, because it’s personal info they don’t need. Family and friends however… those are the people with whom to be honest and open. If they don’t understand, then they will learn from you - and possibly from a little Miserandino spoon theory story. It’s a super bad habit to get into, and the end result is what a couple of you did… tell your Dr you’re fine. No one needs to be shined on. In all honesty, I don’t even play that game with market cashiers anymore. When they ask how I am, I say “tired” or “so so” or even “it’s not a good day”, if that’s how I feel. I don’t need to lie to strangers any more than friends. If they can’t handle that, oh well.
see how many of us feel the same? what we all need is a support system. If someine treats you different because you have a severe and tramatic sickness you didn’t acquire then it’s really not worth having them in your life. we feel bad enough already to gave someone else with negative energy around. The best thing you can do for you is be selective of who you allow to be around you. Please know that is what we are all her for. We have been not only beaten down by this disease but our own loves ones and peers. Care about yourself and make sure to have at least one perdon you can count on, just one is all it takes. If they believe and believe in you then you can conquer anything. Stay blessed lupus family.
Sometimes we lie because when we tell them the truth they say ok, whether we say we tired, hurt all over, or just have another problem going on, My husband is sick with Parkinson’s they are more worried about him than my health because they can’s see me hurt, dress ion over not being able to work like I always done,how useless I sometime feel. That is why I lie.
Ohhhhh wow, that’s exactly how I’ve been lately! Its so hard when people see me at work n im doing “good” but they don’t know what I had too go through all day (I work graveyard) too get there!! Lately I’ve been feeling that my best friends are not there for me, and im not sure if im being too sensitive??
Brandy, hang in there!!
I understand how u feel, but you shouldn’t feel obligated to be or feel anything you aren’t. I’ll be 50 next year and one thing I’ve learned is that people’s perceptions, assumptions, and opinions are theirs to own or modify and not yours or my or anyone else’s issue. We have SLE or some othe chronic disease and if they can’t understand, participate, contribute, or support, the hell with ‘em. No apologies. If someone asks how I am, either way, good or bad, in flare or out, I can say I’m blessed because I am and it will be the truth because it could be worse. If I trust the person, I’ll elaborate. If not, I smile and keep it movin’.
Hi, that’s how I look at things also, oh well!!!..Beverly L.
Tala said:
I can’t say that I understand… sorry. I don’t feel motivated to pretend anything. Workplace is one thing, because it’s personal info they don’t need. Family and friends however… those are the people with whom to be honest and open. If they don’t understand, then they will learn from you - and possibly from a little Miserandino spoon theory story. It’s a super bad habit to get into, and the end result is what a couple of you did… tell your Dr you’re fine. No one needs to be shined on. In all honesty, I don’t even play that game with market cashiers anymore. When they ask how I am, I say “tired” or “so so” or even “it’s not a good day”, if that’s how I feel. I don’t need to lie to strangers any more than friends. If they can’t handle that, oh well.
That is right!!!...Beverly L.
Say it one more time!!LOL. I have gotten to that point, and now people don't ask Why are you still in the bed or Why aren't you out doing something instead of being at home ? Those questions have not come about in awhile for me. It take time in all things ! Prayer goes along way....Beverly L. itskismet said:
I understand how u feel, but you shouldn't feel obligated to be or feel anything you aren't. I'll be 50 next year and one thing I've learned is that people's perceptions, assumptions, and opinions are theirs to own or modify and not yours or my or anyone else's issue. We have SLE or some othe chronic disease and if they can't understand, participate, contribute, or support, the hell with 'em. No apologies. If someone asks how I am, either way, good or bad, in flare or out, I can say I'm blessed because I am and it will be the truth because it could be worse. If I trust the person, I'll elaborate. If not, I smile and keep it movin'.
Hi, it is really hard for us Living with Lupus!! It take time for us to get the family and close friends to realize that they are our comfort zone from the world!! That is my view, and how I carry on the days with Lupus , and it has worked since day two of being diag. Hope this helps! Smile…Bevely L.
That is great advice!! Children will not totally understand the major part of the information , but their in sight of the message is great with compassion. My granddaughter , is a true person of this fact and she is only 7 years of age . Kids take the bitter with the sweet and apply it to their understanding of the problem when you be honest with them!!! Really I rather talk with kids than adults at times....Beverly L. reet said:
I don't know how old your child is but please don't pretend all the time. I have seen some really bad things happen with children when they had no glimmer of the truth and weren't allowed to grow into the knowledge that people don't always feel good. If your child is very young then the very best of luck raising your little one when you feel so lousy. I know how hard it is and my thoughts and prayers go out to you.
I like that. I hear people say that but the ones that say that are really, really churchy people. I don't mind that they are and in fact love them to death but sometimes it just seems a bit strong. I am going to go with it! Thank you!
itskismet said:
I understand how u feel, but you shouldn't feel obligated to be or feel anything you aren't. I'll be 50 next year and one thing I've learned is that people's perceptions, assumptions, and opinions are theirs to own or modify and not yours or my or anyone else's issue. We have SLE or some othe chronic disease and if they can't understand, participate, contribute, or support, the hell with 'em. No apologies. If someone asks how I am, either way, good or bad, in flare or out, I can say I'm blessed because I am and it will be the truth because it could be worse. If I trust the person, I'll elaborate. If not, I smile and keep it movin'.
There is a website (I went on it a couple of times when I was first diagnosed...not nearly as helpful as this site) called "but you don't look sick". I think that just about sums up what describes our illness. Our illness can be easily as debilitating and deadly as cancer, but so little is written or known about it that when someone finds out you have it they assume it's like a chronic cold or something that is curable. Even my family members that have taken the time to research Lupus on the internet still don't understand it fully as what is written is so dry and boring is virtually not understandable. I try to get as many people as possible to visit this site because I think it's the most informative site because of the real emotions, issues, etc. that we truly go through on a daily basis.
I try to educate the ones that ask. Inform the ones that need to know. And ignore those that refuse to understand...including family. I guess that I am lucky in the fact that my family is supportive, almost overly so. In some cases it has brought some of us closer together, others farther apart. It makes me thankful for the ones that are there for me.
Most days I simply will tell my husband "I feel good today or I am having a bad day" I then leave it at that. He understands that for myself I need to leave it at that. If I have to go lie down he then understands without my having to say more than "I need a nap".
Sometimes the simplest way is just that...the simple way.
You are NOT alone. I promise that you have someone in your family and circle of friends and co-workers that will understand. If you truly feel you don't, there are support groups and you have a family here that will ALWAYS be here for you.
Big Hugs,
DeAnne
I totally understand where you are coming from. Even my own Mother and Sister have called me lazy and miserable before. I personally think I hide my disease very well and always try to have a smile on my face no matter what. But sometimes I get tired! Plain and simple, I just need sleep and they do not understand that at all. I've been battling with this disease for 10 years now and I still feel like they think I'm faking it. It's a very frustrating and lonely feeling! My Fiance has been wonderful too, but I also don't want him to think that all I do is complain.
I no longer hide the way I’m feeling. My friends and family know just by looking at my face how I’m feeling. Well, my kids don’t but I save my energy for them. I’ve been dealing with this disease since I was 7, I’m 43 now, so I don’t really know what it’s like to have a “normal” body. I learned that some friends just can’t handle it and those I only see occasionally. Others just want my company and like having me around even if I can’t go climb mountains with them or whatever. My husband has a hard time handling it sometimes but I encourage him to go out with the guys to get away from it. My house is fairly messy (more cluttered than dirty) which he really doesn’t like but we have 3 boys and I just can’t keep up with it. I had to tell him that his attitude (anger and resentment) was affecting my health and if he felt a clean house was that important then I would move into an apartment and he could divorce me and marry a housekeeper…lol It wasn’t until he developed gout that he finally understood what I felt like all the time. You have to take care of you. If people are giving you a hard time then tell them to stfu. I had a woman give me a hard time at the DMV because I was sitting at the disabled area ( I have disabled plates) because I don’t look disabled. She was very rude but I just smiled and calmly said I am disabled, she them went on to say well people are looking at you. I had a very hard time not blasting her and asking were you born with your disability or did you get it because you ate too much but I just can’t be that rude even if she was to me. Sorry, I don’t mean to go on and on. The point is only you can decide how you are going to let other people make you feel. If they constantly make you feel like crap for being sick then tell them the truth, that you can’t be around them because they make you feel worse and you don’t have the energy to deal with their feelings and emotional crap. Or just avoid them as much as possible. You’ll feel much better once you dump the load of their expectations. I hope you feel better soon.