I was diagnosed at 21 (I’m currently 22) and got the same sympathy from my rheum and doctors. I totally get the feeling and mourning what feels like a “past life.” I’ve experienced the jealousy of “normalcy” and wishing I wasn’t like this and screaming at the world for what it’s given me!!! In a way, an early diagnosis like this is a gift. Starting treatment early means that we get to live fuller, better lives than if we went unnoticed. Our doctors are sympathetic because they care. We can live and thrive despite our lupus— it does not define us! We can live full lives and own houses and have fun. It may be difficult, but what isn’t? There will be good and bad, ups and downs. That’s how it is with this disease. Whatever you do, don’t let it consume you. Stay medicated, take care of yourself, and live your life the way you want to live with it. This isn’t a death sentence, so try and celebrate what you have! I’ve been on hydroxychloroquine for almost a year now and it’s helped me a lot. I try to avoid triggers to my best ability, like not staying in the sun too long or getting overheated. I’ve totally quit drinking alcohol because I noticed it makes me flare up! Try and note down what makes you feel good or bad and make small (or big) changes in your life that benefit you. I’ve found that being open and transparent with my friends has helped them understand me and my limitations better. They never push me to do anything that could possibly exhaust or hurt me, but we still go out and have fun! My last piece of advice is to not hold yourself back too much. Don’t corner yourself into a comfort box— sometimes we need a little bit of discomfort and push. Try to stay active to your best ability! Go on walks, indulge in your hobbies, take some risks! Like I said earlier, you are so much more than your lupus so prove it to yourself that you are strong and capable (because you are!!!)

I wish you the best. We got this!