James’ Story: Experiences of DPDR
I am James, with years of Depersonalisation and Derealisation Disorder (DPDR). It is good that mental disorders are now more publicly acknowledged, but the invisible disability of DPDR remains under-recognised. I find the severity of impairment also can be under-appreciated, except by those most around me. DPDR imposes a profound loss of my experience of being in the world. Factually, I always know what is real and I am sure that I can escape DPDR.
Since DPDR replaces one’s awareness with a subjective state of unreality, finding a description meaningful to a non-sufferer is elusively difficult. I respect others also enduring and navigating DPDR. My path has included misdiagnosis and being misunderstood. I had to go to a library to discover that I had depersonalisation. Later, I reached the Depersonalisation Unit in London.
With DPDR rejecting experiential perception of my environment, body and self-presence, it is exhausting to do my basic daily tasks. I must move and care for my depersonalised body, which to me is awkward, deadened and separate. I struggle to see and interpret through derealisation: my surroundings are not as a real or present scene, and I do not feel I am there. I learnt to trust what is real and happening, so I never get alarmed and I avoid obsessive doubts. I take things steadily, being kind to myself. I stay indoors as needed, because I am unable to process outdoors (including traffic noises and movements).
Understandably, it is uncomfortable that others are more aware of my presence and voice than I am. I try to tell where I am, that I am not elsewhere, if someone is actually there and to recognise them. Without emotional memory, I lack a sense of any previous meetings with the person. So, I work to keep up with conversations (and voices are as emotionally detached as my vision). Effortfully, I analyse to get by and people say that they would not guess there was anything wrong. Often, I say I have DPDR, since it is what disadvantages me (and it can lead to misunderstandings or gaffes). Many good people wish to comprehend my altered state. Others cannot begin to understand, saying “but you are here”, or (annoyingly) talk of me gaining “confidence”(!). I give DPDR literature to health workers. Most are very interested, a few were patronising.
Typically for DPDR, I feel the loss of not feeling I am here. DPDR also inhibits my sense of time and history.
The charity Unreal works towards deserved recognition for DPDR and sufferers, whom are carrying a huge personal challenge: emotionally, philosophically and practically. I pace toward recovery with steadiness, logic, and patience with myself. I find it important to notice good things, even while not feeling them. I am now good at optimising my scarce hours of ‘least unrealness’, for progress and effective daily self-care, before DPDR incapacitates me and it is early to bed.
To manage and return from DPDR is a resilient achievement and challenges its defensive nature. I have referred to DPDR as an “it”, but it helps me to know that it is an innate protection which has outstayed its necessity and become destructive. I expect to reverse DPDR and emerge into the clarity of awareness which lies beyond it. I have rare but wondrous moments of reduced symptoms; moments which reveal a crack in the ‘door’ to vital perception, a door which can re-open.