I've been suffering from it for a few years now, I think it's getting better or at least parts of the disorder are getting better.
But when I first realized something is terribly wrong I was 19 and I went to all kind of doctors and specialists, neurologists, psychologists and psychiatrists. The m.d group had no idea what I was talking about, the mental health group, knew to call it by name, and then just shrugged it off, because there isn't allot of research about it, and even though it's a separate disorder in the literature, most mental health clinicians will look at it as part of a bigger picture and therefor not so important to focus on, but in reality the people who suffer from it know that even though it maybe part of a bigger clinical picture the pain and suffering is real, often too real. I don't know how about you, but I would give all of my limbs and then more some if someone could promise me it would cure my dpd.
I understand that part of the problem is based on how subjective and internal the experience is, most people clinicians included will never really know what does it mean and feel like to "not feel real", to "have no memories or emotions", it's something that is hard to conceptualize if you never experienced it first hand.
Part of it has to do maybe with us, the people who struggle, often not recognizing how "not normal" it's all is, maybe gotten used to it (but not at peace of course).
maybe even our memory lost: not being able to describe the symptoms, how long we had them for, how did it feel when they happened and so on.
huge part of it I believe is that "classically" and when not including the stress and anxiety symptoms that come with suffering, the symptoms won't manifest externally as strongly as in other disorders,we are grounded
in reality (no psychotic hallucinations), we don't have manic episodes, the depression that comes with the suffering is an appendix to the disorder not the disorder itself, and so on.
we even try our best to hide it as to not hurt anyone due to our lack of emotions and not recognizing our loved ones.
So what can we do to change it? How can we bridge the gaps between us and the medical/mental health community?
because till we do that, no one is gonna come up with a cure or a treatment, and more and more people are gonna suffer.