The lack of knowledge doctors have about it, even dermatologist. It is like they really don't want to know or look at it. My dermatologist is a good one, but he is a germaphobe. These two things do not go together. I guess he has seen so many people with it. He never shakes my hand and usually keeps his hands on his pockets. He has performed incise and drains on me before, if needed. Maybe he is just paranoid working in this field. Also, nobody quite understands how draining it is unless they have it. It causes quite a bit of fatigue 😞.

The effect it has on your life..Its so painful sometimes your are not able to do normal things like laundry because you can't move without feeling pain.

The way it affects your self esteem

Definitely mental health

The smell that comes from the flare ups.