Originally Posted by
annekat
Welcome to the forum, ST316. I haven't been keeping up with the forum as well lately, so my apologies to any other new members and posts I haven't acknowledged. I will say that this is the best place to come to find the information and friendly support that you need.
It's sometimes hard to gauge whether we should mention our illness in public while relaxing with friends. I would say, play it by ear, and if anyone has a reason to think you have some health concerns you might want to talk about, they'll ask you, if you are close and with other close friends. Every situation is different. There's a running joke here, "you don't look sick", because a lot of times we don't, and in those cases there is often no reason to just blurt out that we are. We aren't being dishonest by just letting the conversation wander at will but being prepared to discuss it if it comes up. Good friends will find out eventually, just in everyday conversations. The important things about being in public are: it's not contagious, and people might like to know that, but we are on drugs that suppress our immune system so are more likely to catch things from others. I have had almost no problem in this respect, though I'm in public two days a week in an outdoor setting, handling money and talking to all kinds of people. I practice frequent hand washing and using sanitizer gel. If I start coughing, I tell people my condition is not contagious, is more like allergies, etc. But I am a bit of a recluse, otherwise, and I suppose WG/GPA has made me more so. On the other hand, since joining this forum in 2011, I have made dozens of genuine friends all over the world. That is just my rambling 2 cents about what you asked, and I'm sure there are other viewpoints. It sounds like you are in the hands of good doctors. It can take awhile for Rituxan to work, and tapering pred can take years. Everyone is different, and things probably won't go according to a predictable schedule. Just know that this disease can be managed effectively and it may not affect the course of your life or your social activities as much as you might fear. I'm glad you found us, and please keep us posted! Also use the search function to find all kinds of info about all aspects of W/GPA.
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