Tips on How to Share your "diagnosis with family, friends, the public and so forth - These tips may help in any type of chronic illness or pain issue, not just autoimmune

www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Living-Well-with-Rheumatic-Disease/Sharing-Your-Diagnosis-with-Others

The above link comes from the Rheumatology site and it gives you assistance on whom, how to, what to, say or maybe not say about any illnesses such as RA, Lupus and other autoimmune issues, but many of these same tips, when you have an "invisible illness" especially could help you also.


I know for many, they feel an isolation, a coldness from others, when they explain being "chronically" ill. Some want to try and put it off to you just being "lazy", or to use as an excuse to do or not do something. Others thing you are just faking it, or that it is a way to gain attention... all of which is total bull, but I can attest that even DOCTORS can give you that feeling. In fact just last week, after being ill for months with other issues, and feeling as if I had a Lupus Flare coming on, that ONE DAY after an entire year of not getting to see him, but deal with his PA, and guess what? That is the one damned day, I feel "better"... and I had emailed me on several occasions about how lousy I felt and what all was going on, and yet then he walks in expecting me to look horrible and I look fairly well..... I knew he wondered if a part of me, was just complaining to complain. So, then I spent two entire days, plus even the weekend feeling lousy, a headache, a stiff neck, the mylar rash my throat feeling swollen and raw..and today Mom and I went into see our PCP.. well I did not look all that well this morning, BUT I also once again did not look as "sickly" as I had felt and been over those past 4 days... I did tell him that my Rheumy gave me the flu shot.... and i told him usually I kind of feel lousy or maybe achy a bit, but never have I ran a fever, high enough that again I was almost hallucinating... every joint hurt, my head and neck hurt so badly... and so I thought he would give me a corticosteroid injection to slow down or help this Lupus flare go away... well he said the "new" flu shot this year contains FOUR rather than 3 strains of flu and thus my body may have reacted quite differently due to being autoimmune & if he gave me the injection and the prednisone, then my flu vaccine would basically be "useless" because my body would fight it off if I took that now...

So, I have to wait at least another week, and if I still feel as if I may have a flare THEN I can go in for the injection and medication.... so now I have to I guess just tough it out, which all too often is easier said than done.....