My name’s Hollie and for the last three and a half years I’ve been suffering from Pervasive Arousal Withdrawal Syndrome. Read Hollie’s story here in her own words, shared because she wants others to know that even when everything seems bleak the future can offer more than you would dream.
For me, it started with worsening depression and anxiety; which led to frequent meltdowns and the inability to cope with daily life. I dropped out of school shortly before I was due to take my GCSEs and would cry and scream after anyone came to the house. When my mother tried to stop me from hurting myself I would panic and turn violent. I found the sensation of having anyone touch me or even come close to me completely overwhelming and I got very stressed!
Eventually I was admitted to an NHS Adolescent Psychiatric unit. At this point this filled me with hope – expecting them to be able to get me better. I made wonderful friends there that four years later I still see and can talk with about anything. However I made very little progress mentally. I’m not sure they knew what was wrong and in all fairness, neither did I.
After 6 months of making no progress (if not going backwards), I was discharged with the consultant having the opinion that my problems were self-inflicted. This was, in the care team’s words, because my symptoms ‘matched no other diagnostic criteria’. In the weeks leading up to my discharge I had felt unable to talk whilst on home leaves, had various members of staff get rather angry with me when I refused to get dressed, or go to meals. They didn’t understand at all. The evening after this diagnosis in a side room on the ward I called Childline. Being able to talk to someone completely removed from the situation, even about something as mundane as past outings with friends, bought me back down to earth and helped me better understand what had just happened. The hospital started out as my safe place, but it was this diagnosis that caused my complete shut-down from life. It took very little time for me to stop talking, walking by myself and self-caring. I sat for 98% of the day with my head on my knees, shutting the world out and cried. I cried a LOT, I was in constant distress. I couldn’t even cope with the presence of my own sister or dad, let alone anyone else in the house. I even pushed my dog away when he tried to comfort me. I now know that a lot of the care I received from the first hospital was wrong; forcing me to do things I didn’t want to- such as continue with education and engaging with the staff when I was withdrawn, leaving me to hurt myself, and mainly suggesting I had any control over my symptoms.
A nurse from CAMHS eventually saw me and suggested I was suffering from Pervasive Arousal Withdrawal Syndrome. Now I had a proper diagnosis my family began appropriate treatment for me, in the form of feeding me, brushing my teeth, washing me etc. But I wasn’t improving and my parents were desperate not to send me back to the hospital I had been to before which had just not understood my condition. I wasn’t mentally aware enough to care, but I heard the word hospital and shook my head. Nooooo, not going back there again.
My meltdowns brought us to crisis point. Six ambulances in a week – I was either going to seriously hurt myself or my mum. The ambulance teams were, on the whole, lovely. But they didn’t know what to do with me. With no mental health provisions for adolescents at general hospitals, they left me in a side room just as distressed as when they had picked me up. I desperately needed hospital care. I was taken from A&E to another adolescent unit. Unfortunately, despite the best efforts of some of the staff , they also were unable to provide sufficient care so I was transferred to a specialist unit – Ellern Mede. From the off it was different – they had me on 2:1 observations, with a person sitting either side of me. I didn’t mind when the doctor that came to admit me held my hand and spoke softly to me as she took me into the medical room. Other than that room, it didn’t look like a hospital, not like the first one I was in. She told me it would be alright, but I seriously doubted it! They helped me get dressed, fed me and straight away prevented me from banging my head. Just because I wasn’t talking or responsive in any way, they didn’t make the mistake of thinking I was stupid and talking down to me like a child. As difficult as it was to believe, I wanted people to know that I was in there somewhere, and was just as bright as I was before.
Very slowly I began to recover, doing more and more things by myself. It became clear I just needed all pressure to be taken off. I found it very hard being around other girls on the ward, as at this point I was not equipped to cope with them, especially not when they came and tried to sit with me or talk to me. But I saw other girls make friends on the unit, like the friends I had made in the first hospital and I knew how those friends could pull you through difficult times. I did develop relationships with certain members of staff, who made a huge difference to my recovery. When they said they would come and see me or do something or other, I needed them to do exactly that, as I couldn’t cope with any changes of plan. The noise on the ward was very difficult, as I was (and still am to a degree) extremely sensitive to noise. I didn’t bond with every member of staff but I knew there was always someone there to help. They took me on outings to farms because I love animals and also got me dog therapy; animals were the only things that could reach me! I started to write to my friends and was lucky enough to get lots of replies. This really helped me at this point in my recovery; the walls by my hospital bed were covered in pictures of them and my family, and their names to remind me what I was fighting for. When my mum visited, we made a scrapbook together when I couldn’t leave the unit and eventually went to a restaurant for dinner when I could! Then I started going on day leave from the hospital, and then weekend leave, until it was agreed that they would let me home (thank goodness!)
For months I sat still, with my head down, doing nothing. Eventually I was able to undertake small craft projects and then my attention span grew. I think you get the idea how slowly I began to improve; I began to leave the house to go to quiet places, then busier, then louder etc.
Three months ago I would still have frequent crying fits, seldom left the house and couldn’t cope with anyone other than my immediate family.
By three weeks ago I left the house slightly more often, my mood was mildly more stable but still very low and I managed to see people briefly.
I asked to meet a counsellor and through writing things down in a book. We went through the events of the last three years. Today I have been talking to my family (literally talking, after two years!) and I’m back at school, and at 19 I am FINALLY doing those GCSEs that I was dragged away from (I’ll changed ‘dragged’ to ‘saved’ when the exams start I reckon!
I owe Ellern Mede (and my family of course) my life, because they saved me and I couldn’t be here without them.