Lostness. How you can be going along ok and then suddenly it feels like everything is sucked out of your insides by the great emptiness that swallows you. Trying so hard to be “normal”. Shame of being bad, different.Fear of people finding out about you. Reactiveness from inside when all you long for is peace. Shrinking life to make it safer and more controlled. Confusion. Not understanding why everything changed so quickly: life before diagnosis and now. Who was that person then, who am I now, who are we? — Megan

Keeping track of time and memory loss. — MoonFlea

Having to accept that I do exist and therefore I have to do that relating-to-people thing (tricky to manage unitedly). And this at the same time as coping with denial from outside, which makes us have to deny inside, whilst also trying to accept it for ourself. Aaaargh!

And knowing what I know, which means carrying the feelings about it, all alone while the world makes a big deal out of ‘The X-Factor’. And not slipping back into denial in order to simply manage everyday life. Having to relate to ignorant, superficial people when what we really want to do is to tell them and make them have to face it instead of being allowed to get away with misjudging us. — Motleycrew

Switching – who am I??? — Pebbles

Trying to understand and accept that the memories of the first 16 years of my life happened. Not trusting my own perception about anything. The stigma of mental health. Body pain. And trying just to accept there is a ‘we’ and realising that there always has been a ‘we’ and wanting to be an ‘I’, but having to have the constant denial-battle. All the daily thoughts, feelings, and beliefs that affect how you react and behave in such a profound and primal way that you cannot fathom anything else. Having to hide who you are. — Gazjalou

Not knowing how I am going to feel physically or mentally as I wake up. The feeling of constantly letting family members down because I cannot do what they want me to do due to physical pain or fear and phobias.Seeing their disappointment in me – and them not understanding why I can’t just push through the pain and my fears. — IvyMay

Who am I? Where am I? What am I doing? — Didasdmum

Losing 90% of my free time to ones who are often sad and traumatised, and watching/listening to them but being totally unable to help or comfort them while they are in charge. Losing the free time means self-care is much harder. — Notallthere

Looking out of my blinds and then not being sure why I looked and what I am looking for. Trying to remember what I have done and wondering if I did what I wanted/needed to do. Asking my dog, “Did I feed you yet?” (He always answers, “No.”) — Wiesel

Confusion and fear. — IvyMay

Grieving for the loss of a family I thought I had, for the absence of a life that never even existed and now a lack of rules and structure that I have based my life on so far. It feels like I was raised being told that the world was flat and so I had to exist as though it was without the laws of gravity. But now I am an adult in the world, I have found out that it is round and the laws of gravity do apply. I don’t know how to grieve for the loss of a world that was false and now behave as though I won’t fall off the edge of the world if I keep walking, so it’s safe to keep going.
And this whole “grieving” process is a minefield, torturous and hard. In essence that’s what’s hardest about having a dissociative disorder for me day in and day out. Because now I have to painstakingly reconstruct my own rules by washing away a lifetime of old rules while still feeling the old rules apply. I now have to unpick every reaction I have, every instinct I would normally follow blindly and redefine the how and why without a guidebook or a road map. How do I even go about and function in a world which is upside down and inside out? It seems impossibly hard to exist in the world that denies there are any rules, especially as I now know my rules are obsolete or maladaptive. What do I fill that void with now? How can I appear normal? — Tortoise

Feeling bewildered.Not understanding my feelings or triggers.Internal conflict.The disconnect. Thoughts disconnected from feelings. Disconnected from family or friends. Disconnected from my body.Being spacy.Switching – disorientating: being completely lost one minute and then finding myself ‘fine’ moments later. Then another switch. Each one feels unreal once I am in another state.The loneliness. I have a partner, kids, friends and have been to counselling. But most of me has to be hidden. The counselling isn’t helping. I feel defective and that if only I tried harder it would all be ok … but it isn’t!—Wisp