I did for years it wasn't like I just kept a secret it just never came up in conversation plus for many years I had no major symptoms. I always "looked well" . I would say occasionally my arthritis is acting up today if I was asked to go or do something with friends or family. However at times I would still manage to participate in activities after taking my medicine.

Now that I have had lupus for 19 years I am starting to have difficulty managing the disease. I don't "hide it" anymore.

I still " don't look sick" but inside I feel it.

I understand your husbands desire to not want others to treat you as a sick person, but Lupus is not something anyone should hide from or hide from others. I wanted to hide the fact I had Lupus in the beginning, because I was afraid and Lupus takes control of your body away from you. However, the more people understand about Lupus the better chance we have of one day finding the reason some of us get it and others don’t and finding a cure. Men are fixers and if they can’t fix something it’s better to ignore it, but women need support and the ability to talk about it, because we are communicators. That doesn’t mean we want to use Lupus as an excuse for everything that happens in our lives or are seeking sympathy in hopes people will feel sorry for us, but Lupus is a fact and exists and we are trying to move forward as fearlessly as possible. We all have a mysterious disease and we suffer from it. I encourage you to find people whom you can talk about Lupus with; you need that...we all need it. Love and Light to you.

I know how you feel. You don’t want to wear a label. We all need to handle it in our own way. I didn’t tell anyone about my illness until it started impacting my activity.

For 13 years only my family knew until in 2013 I had a major flare that damaged multiple nerves in both hands and feet. I was paralyzed from waist down. After that there was no hiding it so I just started openly talking about it. I felt better and realized I was educating some people. It felt good. No more hiding

Yes its my secret for a very long time, I think sometimes I wish everyone knew but my husband is not keen on others knowing. It would help if people knew so they would stop asking those awful questions and passing comments on your weight like that is the main topic. Nobody understands the side effects of the meds and how awful you feel with all the drs visits and how some days can be awfully bad and some good.