Great article, I hope this helps just a little. Next time just say you don't drink alcohol and leave it at that.. no one needs to know if you choose for them not to know.  I am the mother of a chronically ill daughter(CIDP) and there are times when I am at a party and refuse certain foods as well as alcohol. When people ask if there is something wrong with me, I say no, should there be.  Then I go on to say, I would prefer a glass of water (or whatever it is you want to drink) for some reason people think you should have a glass in your hand when at a party.  For years I explained to my daughter to always bring a soda for something in her hand, no one will ever know what is in the bottle or cup, which ever the case may be. She is turning 20 this week and has passed this little trick on to several of her college friends who choose not to drink.

To answer your question, it is rude, but not intentional rudeness, it is unaware rudeness.  I have lost many a friend because I do not want a wine glass in my hand at every party.  So chin up and carry on as you are.  There are people out there who will respect you, illness and all.

Very well said. Thanks for expressing what many of us experience so well - if only the thoughtless and the rude could read it!

Great article! This has happened to all of us at one time or another. I have an immune disorder, and I also have Complex Regional Pain Syndrome (CRPS) which used to be known as RSD (Reflex Sympathetic Dystrophy), but whatever you call it, it's constant burning pain in one or more (with me it's more) parts of your body. Every time I go to church, people expect me to say I'm better. I've had this for 21 years, and you'd think they'd understand it by now, that it's here to stay, but you get the same thing: "But you look so good!" , or "No one would ever know you have a problem" (like me, they're thinking. People seem to think I'm a hypochondriac, or as my nephew used to say, "a poser". You just have to get past it, forgive their ignorance, and get on with your life. Whenever we go out amongst people we don't know really well, we're going to get misunderstood. The thing that amazed me recently, is that my mom, who is entering dimentia, finally said something that let me know, she didn't understand my pain either. At least I'm blessed with a great husband, sister, son and daughter. And as long as you know that someone understands you, you're OK!

Wonderfully said. I so enjoyed the Blanche DuBois quote. Sometimes I feel as if we are treated as Blanche was in the play- treated as if she deserved mistreatment. Like Blanche, we were dealt bad hand of cards and it is amazing how well we handle it.

And I have a doorbell that takes your picture when you ring it......

I shall use your words as my motivation for today. I too have no immune system and I have found that the constant rejection has whittled away at my perseverence over the long years of isolation. You probably have a ton of reoccuring annoyances that follow the same pattern and you wonder if there is some message. I have been amazed at the manner by which society tends to change whether they want to or not. I've noticed in the past decade that 1. nobody answers their phone anymore 2.online businesses try to make it impossible for you to contact them. 3. People don't have real conversations, they just have verbal texting, little quips or quotes they heard somewhere and probably don't even know how it applies.For example, my favorite...."You have to be your own advocate you know." I lost count of the times I've been advised of that. I always wondering if they are too dumb or too insensitive to understand that the sick person is probably too sick to advocate much. But somehow I doubt they even know what an advocate does, they just heard it somewhere and it sounded like a good comeback. That is why conversations are so short. Most of them aren't worth the energy required to continue because these people aren't really "in the moment with you." They always want to know how you got sick. It doesn't matter what you say, it could be anything at all, even something ridiculous because they are going to reply with, "Oh, well, we don't do that." They have just convinced themselves that they still have control over their lives, but they haven't a clue as to control over what? And don't you just love to be reminded about Karma?
I am glad you have some support. I really did expect that the support I gave my first 20 adult years would be returned in my time of need. Instead I was resented for not being able to continue being the rock of the family.. Even after fifteen years they still don't get it.
I finally realized why so many sick and elderly are abused when they should be helped. It is because the very ones who should be their voice allow it. They are too afraid they will end up being burdened by your problems. They reason that at least bad care is better than no care. Once you have lost basic consideration, there is no one who will say a word. It almost becomes where the illness is the secondary problem because you are never allowed to heal. It's like a snowball effect. If you get those initial rejections or ridicule or not believing in you, everyone just sort of goes along with the unspoken consensus. Not one person ever asked me what disease I had. Yet all ten members have all come to their own conclusion as to what my problem is. They arrived at the most convenient diagnosis for them, so why would my opinion or information be needed?
I learned years ago that when doctors don't take care of chronic problems in an acute manner, other body systems will come to help which ever organ is ailing, but that puts a strain on that area of the body, and you have a cascading effect that becomes a true journey of survival. Many years, the immune deficiency was the least of my worries, I've been on infusions since 1998 and sub-q since 2008. For me at least, the treatment is about as toxic as the illness as the sub-q renders me unconscious for two or three days. The last thing I need is my son to come lecture me about exercising or thinking positive. But they can't see that you're so weak you can't lift your head. So I just lie there and listen except for one time when I looked at him and said, "I know you think I am waiting for some miracle to come heal me, but I'm not. I'm waiting for you to see the miracle in me."
I guess what I'm saying is that I know I am only one person, but I know what it take for you to survive. Way to GO! Someday our plight will be revealed and great grandchildren will be told stories of our courage.
perfectlypeg