Hi,
I've been suffering with this condition since the Fall of 2010. Thankfully, as of the past three years or so, the illness has been dormant for the most part. I'd like to give those suffering out there some hope, YES the condition does improve with time, for most. Though I still get the occasional half-day lump (seriously, it seems to disappear almost as fast as it shows up), I am in a much better place today than the first three years after onset. I cannot thank doctors or medications, but simply exercise, rest, better nutrition and my own faith, and family support for carrying me forward.
For those of you who are actively suffering, yes, it does get old for people not to "get" the real pain we are in. I stopped saying to people I suffer from Granulomatus Mastitis, because; inevitably I would get the same reply, "Oh, yeah, I had that too when I was breast feeding." Obviously, the listener only hearing Mastitis and ignoring the "Granulomatus" part. Yes, Mastitis by itself can be quite painful, but ours is a much more complicated and pervasive illness. Mastitis tends to be short-lived, ours is a life-long condition. Yes, Mastitis is pretty awful, but usually disappears when breastfeeding is stopped, and as far as I know, it's a completely different condition than what we are facing.
Once, while trying to talk to a friend about the fact that this condition mimics an aggressive form of cancer, especially at the onset, she said, "Oh, good, so you have cancer, people just go and get cured for that now-a-days, you know."
I'm not sure if I'm just living in another world down South, but people just don't seem to get the pain and suffering this disease causes the woman, the children and the other family members involved.
All my empathy and caring goes to those brave women who are, most often, dealing with this condition by themselves, in the quiet. I encourage you to share what's happening to the extent you feel comfortable, so others perhaps can "really" learn about the tough waters we are treading.
Walk, dance, do yoga when you can and try to get some rest.
Soft hugs to each one of you out there. YOU ARE NOT ALONE.