PTRah11
Supporter

What do you want others to know about lupus?

Most everybody's path with this disease is different and it changes over time. You can be fine one day then down and out for a week or more. Lots of people have it but there is hardly any awareness which also means hardly any disease-specific treatments. Don't judge people by the way they look because you have no idea what they are dealing with!

Why is lupus a cruel mystery to you?

The Spoon Theory says it best. I can't do the things I used to be able to either because I'm too tired or feeling bad (either from medicine or pain), or my skin doesn't like being out in the sun (i.e., everything outside). Not to mention the side effects of the medications - do they all have to make me gain weight?! Then it's hard to get the weight off because you're still on the medicine and you hurt to move and just don't have the energy. And friends and family don't truly understand and I feel like I'm neglecting them when I don't do things and they give me a hard time. At this point in my life, I'd like to start a family, but due to my medicine and disease activity, I've been told it's not a good time to try now. I'm just not living the normal life of a 31 year old. It sucks!

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