I can be pretty honest with my mom. She is pretty awesome but sometimes she blows what I say off and will reply with something of her own going on. I also hate having this disease and feeling like you need a lot more than you can repay of those who help you. I hate not being able to help the people that help me out and they don’t get it (or you don’t think they believe you) when you say you can’t help them out
I hate feeling like its a one sided relationship. Thanks when I go to pretending… Thanks for replying.
keepgoing said:
I definitely understand this. As an at-will employee if they don’t feel I can handle my job, I am gone as well as my insurance. I hope you have at least one person you can be honest with about how you really feel.
I agree. I do try to be honest with my son (only child…Turned 6 July12th) he just worries so much about me and is a worry wort. I try to only tell him what I think his little brain can comprehend without going into overload. Know what I mean. I have those times when I want to cry and feel sorry for myself and just sulk and it’s those days that I suck it up and pretend to not want to do that for him so he will be a kid and not try to take care of me. I think the amount of information kids get about real life should be based on the kids age and emotional and intellectual maturity. Thoughts???
Thanks for the replies!
Thank you for the reply. I appreciate your advice very much!
reet said:
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’.
Thanks so much for the reply! I like your attitude! But I just realized that I sometimes start to believe what I think others are thinking… For example, I will be sleepy all day and lying on the couch and my husband will be outside doing yard work and he comes in and says your still on the couch.? I know he is thinking “make yourself get up. You cant be that tired and sore. You ate so lazy”. So I think the same things to myself and make myself get up and clean, do laundry and cook then pay for it later. Never does anyone say “go rest”
Or “don’t worry about doing that, I’ll take care of it” so you just pretend you can and never have much joy online bc you just keep working and doing what you have to do to keep your job, family, insurance, house, medications and a little sanity. Sorry fort rambling too… Lol
Annemarie said:
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.
If i say my back hurts or whatever it is, My husband always says, “o’ you aren’t hurting that bad” or “it does not hurt” because I’m not doubled over in pain I’m not allowed to complain. Well I have a pretty large pain tolerance. I always have. I have tried to tell him that I only say it mainly bc I’m concerned with why its hurting or how to keep it from causing other problems or if a flare is coming on or just to vocalize how my day is going for simple conversation.
Lupie84 said:
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.
Thank you for the reply! It definitely helps me too to also hear you say u can feel good one minute and terrible the next. Good luck to you with your health and relationships.
mailee said:
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.
Thanks so much for the reply angelwing. Best if luck to you!
angelwing said:
I know we all need support during our days that aren’t too good. I am extremely lucky that I have a very understanding family and I know I can tell them anything when it comes to how I feel and they will pitch in if needed. My oldest son and his wife are both nurses as was my youngest son’s wife so they are familiar with what all comes with Lupus and Fibromyalgia which I was diagnosed with 20+ years ago. I know at first they didn’t know about it, as did I, so we did a lot of research and I made sure they all knew as much about it as possible. I was diagnosed just recently with Lupus and Raynaud’s so I again did the research. I had jaw surgery just a few weeks ago and the pain from that and my flairs have really been tough. Today we had a baking class (Mennonite ladies teaching how to make cinnamon rolls and yeast rolls) at our church and my husband and I attended. I really wanted to be able to stay for the whole thing but was hurting so bad in my back and neck that I could not get in any position that would help. Finally after suffering through about 2 hours of it I told my husband that I just had to go home and lie down and he handed me the key and said he would get a ride home. He knew if I was leaving a great class like that then I was really hurting. I went home and laid down for over an hour so my pain meds would actually help. My church family is great as well and understand when I can’t volunteer for different events.
I’ve learned that if you have someone that thinks you are milking your condition for attention or are just lazy then print out some information on Lupus that clearly explains it so they too will understand what you are going through on a daily basis. Most of the time it’s just ignorance on their part when they poo poo your complaints. I’m glad I found this site where you can be free to talk about what you are going through without worry of being a bother to anyone. I always try to put on a good front around anyone outside of my family as they just don’t understand and don’t like coming off as a complainer to them.
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.
Ditto to all of your thoughts! I think we all pretend and part of it for me is that I don’t want to talk about how crappy I feel. Other times I just want to say “leave me alone unless you are going to do something for me because you want to and not because you feel guilty.”
Daily, I feel this way, sad to admit it. For years I did this until I became to ill to function anymore. Being misdiagnosed for many years did not help either.
I am sorry for your situation Anita. I am sure it is very frustrating. I can only imagine my husband having a chronic disease as well but with more visual effects. Keep your head up! You do matter too!!!
Anita Chandlef said:
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.
Never appologize for looking good! Pretending is to lie, and I hate lies. If anyone asks me how I am, I like to answer, "Next question". On good days I say, "Better than yesterday, not as good as I plan to be tomorrow".
I feel the exact same way at the moment. Another thing that bugs me is when people ask you how you are and then say ‘ah, you’ll be okay though’… I know I’ll be okay, it doesn’t make me feel any better though! Haha, might be petty but it just seems like people only ask because they feel like they have to! The best way of explaining to people how lupies feel that I’ve read is ‘the spoon theory’, so bang on!
I pretend all the time, people don't want to be around sick people let alone talk about it. I smile and pretend I am OK until I have to stand up then I get the looks "whats wrong with her". My family doesn't understand either because we do look good and it is important to us to live everyday with people and family who want to be with us. Anyway I am in pain always, some days better than others but I always hurt and it makes me sad so I come here and talk to people who know and understand then I go outside put on a smile and pretend I am just fine.
Best if luck to you!