Lupus is a chronic disease. This means that anyone who develops lupus will have lupus for the rest of his or her life. As with other chronic illnesses such as diabetes or asthma, there is no cure for lupus yet. However, there are medications and lifestyle adjustments that help most people live active and productive lives in spite of these illnesses.*
I was recently introduced to a young woman, who asked to meet me after being told that I have Lupus. She has been diagnosed around 2 years and so far has had only minimal problems. She is a college student working on her nutrition degree. I was astounded to find out that some of her instructors have told her to never tell anyone that she in interning with that she has Lupus. She was told it would lessen the chances of her being hired if she stays here.
Is she less likely to be hired as a Dietitian than who has diabetes or hypertension? Is it being inferred that Lupus is something to be ashamed of? That we've gone back to the dark ages and have to hide our illness because of the "stigma" attached to Lupus? There is literature out there that says people with Lupus can't hold down jobs or be in relationships. Does that happen? Absolutely it does to some but not to all of us. I've met people who have put off having relationships and working because of Lupus.
My diagnosis is not something I hide, I wear my purple Lupus bracelet 24/7. Before I let others know that I have Lupus, I let them get to know ME first. If its in an work situation, then they get to see my work ethic, how I handle stress, pressure, and deadlines. Usually with a few weeks if someone else hasn't told them I will let them know. It helps them understand that a person with Lupus can be productive and reliable.
Attitude also has quite a bit to do with how we are perceived by the world. I have a positive attitude about life in general. I've gone thru hell and BACK with this disease . Many years ago I decided that I could either live life my way and enjoy it or I could let Lupus be the focus of my life. I will never say,"I SUFFER from Lupus". To me the term implies that Lupus has taken over your life. I don't suffer from anything, I LIVE with Lupus.
Dont misunderstand, I am not implying everything is wine and roses because it isn't. I have bad days too. On those days I am slower than normal and I hurt like hell. I work through the fatigue and pain because that's who I am. I have a routine established and that helps keep me on an even keel.
Lupus isn't something to be ashamed of, nor is it something to hide. I feel that keeping secret adds to the feeling that it is something to be ashamed of. It takes time to change minds about a disease that many do not understand. We can do it one person at a time.
Lupus alone does not define me as a person. It is certainly a part of me, but by no means is it all of me.
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