For me its to have painful sex, there is nothing worse than meeting and falling in love with him, and having to figure out when you will have to tell him that for you sex is no longer pleasurable, it's more of a torture. If you tell him too soon and he is a sexual being he might get scared and run away. If you tell him later than sooner you risk feeling bad for not telling him sooner. I really dont know when to bring it up. Oh and obviously the days where one could have hookups are long gone!

The pain, obviously. What gets to me most is the constant fatigue. I feel lazy and unproductive. Zero energy is terrible. I never want to leave my bed :(

I definitely can't pick just one, but a few of the worst things are:
- Nasty fatigue... horrible!
- Being/feeling like I'm the person who always has "something going on" (a flare-up up, not being able to make it to things, etc)
- People don't get it and, worse, they ching don't seem to want to either.