I hate that I feel like I have to pretend to be OK all the time. To my immediate and extended family members, friends, co-worker, clients at work... even strangers! Not only is every day a mystery but every moment can change in an instant. But you know you look and sound like a whiny, weak, and lazy person so u pretend and fight through the moment(s) day in and day out until your alone then you can crash! I feel like an actress! I many times wish I had terminal cancer and LOOKED sick. Anyone else feel this way? Or am I alone?
Brandy, I often have to hide my chronic illnesses from others. T o be honest, most people shy away when you are not well, either it scares them about what their own future could hold, or they are unable to cope with what you live with. And, sometimes loved ones feel like they cannot help and get frustrated. Wearing a false front doesn't help me, it just shuts others out. I'm learning to cope better with a lot of help from others here. All anyone can do is be the best person they can be at that moment. You are in great company here.
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 really feel you. Sometimes my immediate family has a problem understanding just cause i look Okay does not mean my body and mind not going through something. My twelve year old daughter understands better than the adults in my family. See acts as my caregiver, housekeeper when I’m not well enough to do for self. But it is hard Pretending to be okay. But my daughter tells me all three time i shouldn’t pretend. It adds to the stress.
I feel the same way! Whenever people ask "How are you?", even cashiers, I just want to say "Terrible!"
I undersrstand how you feel and although I have just been diagnosed, I have had so many "crazy symptoms for years pr etending is all I know. The big smile and "I"m great! How are you? " Just comes out…I’ve always been a caregiver, unfortunately for everyone but me. I have to learn, as we probably all do, how to take care of ourselves.
My 15 yo daughter is my best support, which is why I decided to join this site this week. I just need to be able to share my feelings, my fears, get some support and learn to care for myself. She needs to be a kid…life is short.
In the meantime, I’m still working on being honest with myself and acceptimg I have this disease and it’s a lifelong relationship we are going to have.
I just wish they could see the pain so they wouldn’t ask. I have started answering with what day of the week it is. “You know it’s a Monday.” That seems to change the topic enough so I don’t answer. Or since I am a surgery scheduler, I answer “Don’t get me started or you won’t get out of here ( with a wink). How about we get your dates scheduled?”
I totally understand. I helped my mom through cancer, she is fine now. So she keeps saying “it’s not cancer you are fine, quit making it up”. She does not want to hear it. We barely speak because she thinks I am just crazy. I keep telling her it may not be cancer but all the infusions, treatments and MRIs and tests etc might as well be, cause it sure feels like it. It has been really hard but I have given up on that expectation of family support and learned that I have to deal with this on my own. I get support elsewhere, friends, doctors, therapy. It sucks but once you let it go it is much more peaceful. It will come around eventually. My boss at work told me it was offensive for me to talk about my illness to anyone at work. I was shocked by her remark, she is not too good in that regard. I stopped talking about it completely but then HR told me that is not true and it is you who needs to feel comfortable being open about your personal life not the other way around. So eventually it will come around and remember it is about your peace of mind and if it doesn’t work make the best of it and try something else with therapy or friends or doctors. It is never perfect but it just has to work on those bad days that keep happening and if one day you want to be honest and say you feel like crap do it! I do sometimes. It happens! 
Me too!!!!!!!! I so identify with you. I just hate when people feel sorry for me, but i can only pretend for so long before I just have to say"I can't pretend today, I feel like dog poop today, what ever you need from me will have to wait for an other day".
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."
No you are not alone. I feel like that all the time. people just dont understand and it is so HARD
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.
If one more person says, “Well, you look great!”. Ugh…
You have brought up the one subject that is common in ALL Lupus patients. It is so hard to be cheerful and giving when what you really want is to curl up somewhere and be left alone.
Problem is... most people do not like to be around sick people. And so, when asked "How are you?", I'm likely to say fine every time. And because I look fine, it's a passable answer. If I said what I really feel some days,which is more along the lines of..."How am I? Lousy. Absolutely lousy. Been lousy for some time, feeling lousy right now, and apparently will continue to be lousy in the future (heavy on the sarcasm)", I'm afraid no-one would want to be around me at all.
So, like others who have posted, I save the complaining for selected immediate family members only and continue to pretend for the rest of the world...
I was diagnosed in Feb of 2012 but probably had suffer for 10 yr prior. I was doing quite a bit of volunteer work in the leadership of two different aviation groups. We had monthly meetings in both. I got very good at hiding how I was really feeling. When I got to the point where I couldn’t keep up the charade, I would head for a bathroom or another conference room that was empty. Eventually, my husband would meet me there to help. I’d straighten my self up, touched up everything and head back out with a smile on my face. After several years of this, I began to feel resentfull of everyone around me. I couldn’t understand why no one would step up to help me. Then it dawned on me. I had worked so hard to hide my limitations, NO ONE, would tell anything was wrong. I didn’t have the right to be angry.
After some time with a counselor, I realized this and stopped trying to hide anything. Low and behold, people stepped up to help and no one told me how lazy I was being for the most part. It was hard to admit I needed help too but I am so glad I did it. Now, taking care if myself is the main goal, not killing myself to keep everybody happy and not be seen as helpless.
There are always going to be those people with their “miracle pill”, suggestions and “special insights” on how to run your life. It’s up to you who you choose to validate your life. One option will add considerable stress to your life, the other could possibly lead to remission. Sometimes it really the road less traveled that is the best path to take.
Hi, you are who you are!!! Don’t pretend, that cause Stress which LEDs to other problems!! Really . I know it is hard but, hay, step back and put yourself in their shoes, How would you feel? Knowing that there is something wrong and you can’t fix it(no matter what you do-it just can’t be fixed). Yes everyone is hurt and only you can fix it to the best of your ability! Set down and explain to the with some information bout there will be changes and times that things (events with them you are not going to be able to do),let them know your health is something serious and hope that things work with all your LOVE, and if they LOVE you just that much they will work through this with you…Beverly L.
Oh!! I forgot to say ,Don’t Pretend, think Relatiy…if you don’t be real with yourself ,who will ??? …Beverly L.
I, too, pretend at times. And I don't like it either. There is a phrase "act as if." Supposedly if you act as if you are well, then you will create wellness. I think it's a lot of hooky...
I pretend with my child, but to all else, I have learned that if someone whom I trusts asks, I need to be honest! We have no room to be vein with this disease!!!
Great topic! Coming up for 2 years since DX. Feel I have 'bored' everyone enough with me me me. Now I too just pretend. "I'm fine, thanks for asking - how are you?"
One result is that I feel my life is a soundbyte & that I cant ever speak honestly or comprehensively. I would like someone to know exactly what its like for me now. There is always someone worse off & I do count blessings every day, but.........
Great we can let off steam here. Best wishes to you all. Kaz xo