How to deal

How do you explain to someone that the cough, sudden chest pain, loss of voice, or labored breathing is not contagious? On my best days, I get strange looks from people because of the redness, and often purple hue, of my face. The slight scaring around my eyes and mouth. The knuckles and fingers that are so damaged that you may think I hung out in tough crowds or had nightly bar fights. There is no telling what is going on in a person's mind as they eye you, or shy away from you. The brave, or nosey, will ask what is up with my face or hands. I tell them the truth, in a simple, upbeat, matter of fact way.

The times I have so much cognative trouble I can barely get a sentance out, I am looked at as some how an idiot. People have no patience for it. And you quickly find out who is a control freak. The days you can't deal at all, because of pain or mental issues, you can find out what others really think of you from their looks or sly comments when they think you are out of ear shot. One such comment recently brought me to tears. The fellow employ felt that I was some how getting special treatment. After all, if I can't breath right or if I loose my voice completely, I can't very well stay at work. Leaving and going home to rest is my only option. My employers know my condition. Yet some how that is considered by some as special treatment. If they had to walk in our shoes one day they might just shut up for life.

I remind myself constantly that these ones do not see, do not know, do not and can not understand. Those who care enough to at least learn and sympathise are treasures. Those who will not are not worth our time or thought. Yet that does not mean that we have to put with a hostile work enviroment or even a hostile home. That is not at all condusive to our well being. As we know too well, my fellow lupies, our stress level is directly linked to our over well-being.

So how do we deal? For me, I keep a super, sometimes way too super, positive attitude. This throws people off even more, as if they expect me to some how be moping around and feeling sorry for myself. I focus on how Lupus has taught me to be a better, more considerate, and more self loving person. That I stop and smell the flowers, litteraly, is a sign of appreciating life, every day. Lupus is a constant struggel, as are the other issues that often accompany it. I have so much more appreciation for my "clear days" and use them to their full.

What are some of the ways you cope or deal?

God bless you! I support your attitude!
My favorite saying is "what you think of me is none of My business!"

Going to have to remember that! I’ve had to develope a really tough skin. I used to worry all the time about what others thought. It was through counseling that I’ve learned it doesn’t really matter and it has no real bearing on my life, so it gets no energy! I have a co-worker who was a friend at one time. When his wife became ill, he spent three yrs not getting anything done and shirking his responsibilities . Now that I am dealing with an illness that could kill me, he is openly aggressive about the different rules I adhere to. I have my rules and they ARE different. But they are necessary. I know it hurts for you to think you’re getting special treatment but, really, you are. It’s necessary. Stop feeling guilty about it and hold your head high because its necessary for you to do your job properly. If this other person needed accommodation do you think he’d do it!? Of course. Good luck!

The only people that will truly be able to empathize with us are fellow lupus sufferers/ warriors. I use both words because our disease does cause us lots of pain and suffering and we can’t put on a brave face all the time, yet we continue fighting through it which makes us warriors, at least among ourselves because nobody but us truly know what we go through on a daily basis. When I was first diagnosed I tried to get others to understand what I was going through. Unfortunately, they can’t see what we feel. I found that joining a lupus support was just what I needed. Here is where you’ll find empathy and understanding like you’ll find nowhere else.

Super attitude!


Hello Mindy,

Your comment to life and dealing with Lupus is one fantastic attitude...yes it's a disease that brings complications to a good many of us but refering to it... your attitude and a good many members is the way of living your life and coping strong, as the old saying goes LIFE GOES ON.

Regarding other people don't even worry, cry or stress yourself because it's all down to pure ignorance of illnesses and what they can cause, i've deafed loads out of my life through it and just have my hubby and you all as my family who totally understand.

(Just keep holding your head up high and if looks or comments come your way...just think to yourself - YOU SAD LOT) because those who do this have sad lifes themselves.

Keep going with that great attitude....Love & kisses Terri xxx

What do you do when all the "rule breaking" isn't enough? I'm in a flare and can't seem to focus at all. I don't work - it's my hobby, singing with a Sweet Adelines' chorus that I'm floundering with. It has become one of the truly bright spots of my life. The singing is fun and the people are terrific. They are understanding when I miss a rehearsal or have to rest - but with this current flare it is really, really hard to focus and not mess up (via brain fog) the words and choreography. What has been a joy , currently feels like a burden. This weekend is our annual contest - I want to go but... Any advice?

Lisa, my advice is to listen to your body. I was an idiot yesterday, not wanting to be the sick woman who was a party kill. So instead of saying I needed to leave, and insisting on it, I stayed longer, draining myself even more. I used way too many "spoons" and ended up borrowing from the next day. BIG NO NO! So today, after pushing myself too hard yesterday, I end up so exhausted that I became a very subdued and tired me who fell asleep in the car on the way home from work. Then again when I got home, I ate, then fell asleep. Translation: Hey dummy, we are tired and need rest. Our bodies are working so hard to keep out the bad stuff and to play war against it's self that we have to realize that we can not do everything we want to all the time. Sometimes we can. To an extent! We have limits, but that does not mean we are to give up or let go of what is important. It means we need to find the middle ground. Being stupid yesterday means that I didn't get to be at my meeting tonight.

On a personal note, I got a nice big hug today from a friend who told me that I was loved and wanted at work. She said I should not let people push me down and to stick up for myself. She's right :)

Mindy, Thanks for the reality check... I decided to take a "break" for awhile and focus on healing. Please take care - no more sleepy driving!!