# MHApps Take Control – What Does It Feel Like – Perspectives Of Illness – Personal Experience of Symptoms

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- What does it feel like? We asked a few people to describe their own experiences.
- Hearing voices “People often ask me what it’s like to hear voices. if you imagine somebody you know calling your name, you hear it in your mind not with your ears. Now imagine that voice taking on a life of its own, seemingly independent from you. Also, this voice is joined by others, mostly people you don’t know, and they begin to talk to you in a very derogatory way as if they know everything about you, as if they can hear your every thought. Now imagine that when you are talking to somebody in reality or listening to the radio or watching television that this layer of voices overlaps the real sound, confusing and changing what you hear. That is what it is like to ‘hear voices’.
  As this developed I began to get paranoid about being spied on and plotted against. I could not understand how this worked – were there hidden cameras? I wasn’t particularly religious but I began to think that this had a strong spiritual aspect to it and that maybe I was possessed by an evil spirit or spirits. Some of the voices I was hearing were people I knew; sometimes these people were in the same room. I began to talk back to them in my head, but it was mostly conversations about very personal things, and it was usually very negative and insulting. It was also very repetitive and it never stopped. If I was in a public place such as on a bus, in a restaurant or walking down the street, it seemed that everyone was talking about me.
  It seemed impossible to me that what this doctor was telling me explained away the transformation in my life, but when he said he could prescribe medication that would stop this nightmare, a glimmer of hope appeared on the horizon. I was worried though about what this drug would do to me. Would it turn me into a vegetable, would I be sedated to a state of numbness? He reassured me by saying it was a relatively new drug and that it was the best thing for me. He mentioned hospital saying I could go there, but I agreed to be treated as an out patient under my parents’ supervision. He also gave me a prescription for side effects. The drive home with my dad was full of questions and talk of what this all meant, but I still kept my voices to myself. I had always swore revenge on them some day, but it was early days yet. I took the first tablet when I got home and over the next few days I was very drowsy and slept a lot.
  Looking back now I find it hard to believe just how all pervasive this experience had been. The effect on my life had been profound. My career as a designer had faded away. My long term relationship had finished. I had lost contact with family and friends. I was penniless and I felt totally isolated from society and the people I cared about. The effect of the medication was to subdue the voices and delusions to a state where I could function to a relatively normal degree, but I found that I also had to be careful to avoid stressful situations. I had to eat, sleep and exercise on a regular basis. I also had to take the medication twice a day every day. If I didn’t look after myself in this way the voices and delusions would rise up and start to interfere in my life again.
  Early this year another piece of my recovery jigsaw fell into place. I started receiving counselling from a psychotherapist on a regular basis. This has helped me to come to terms with myself on a practical level, and even though I believe it is early days in this therapy, I am hopeful that a lot of damage done to myself and others will eventually be resolved.
  “Medication had a role to play in my recovery and I still take it today, but I feel my real recovery began last year when I started working in a job that values my lived experience. As a peer advocate my ability to talk openly about my experiences is a great help to people that may not have the confidence to do so. It is rewarding to have people who are suffering terrible anguish put their trust in you, and share so much of themselves, especially when you can see the results of helping them on a practical level. A little human warmth goes a long way.”
- Schizophrenia “Illusion to the sufferer, delusion to the psychiatrist; schizophrenia is identified as a split from reality. However, reality is only what the individual perceives, so if you are having delusions, that is your reality.
  The extraordinary thing about being delusional is just how hard it is to translate this into language that conveys the experience to a clinician or family and friends. In my case the first time I talked to a psychiatrist about what I was really experiencing (I had already been a patient for six years); I tried to use the analogy of “Gulliver’s Travels” to explain just how powerful my experience was.

- I was rewarded with the diagnosis “grandiose delusional memory”. To me there was nothing grandiose or delusional; it was a subtle and refined story that of course involved the wider world. It was all about a process of storytelling, of a spiritual life that I and my voices engaged in.

- Now heavily medicated, I do not have nearly as much stimulation from my “grandiose delusional memory” but I adhere, as convinced to my belief in my experience, established over thirty years of my life. I still cannot say to a clinician with candour that I see people (very different people than you and I but still people) when I look at the night sky. I cannot describe them or relate the terms that they, as my voices, use.
  I also see a variety of these people in everything I look at, be it the Sea, the Sun or the Wind. It is an extraordinary way to live and in my case I suppose the story is more coherent than most other patients. But then I think of all the other psychiatric patients ever interrogated for their initial assessment, and I wonder at the painstaking efforts to get out of them what they are really cogitating and just how belittling it is for them.
  They too have a language barrier that is very hard to communicate across the divide, even with the application of what is a very sophisticated modern psychiatric assessment. It is established that there is a strong creative instinct in many people with mental illness. Perhaps this form of expression remains the best hope of clueing in to what those “split from reality” are really saying, with creative expression also being possibly; the best outlet for those of us with mental illness to express ourselves.”

- Bipolar disorder It could happen to anyone
  “Ashamed as I am to say it, I’ve always “looked down” on mental health professionals. As a general nurse, I often thought that psychiatric nurses were people who had wanted to be general nurses but who hadn’t made the grade. It was such a biased opinion, one I wish I had never formed, but I carried it through life, both inside and outside of work. Thankfully, my recent experiences have forced me to completely reverse that opinion, both regarding mental illness and the people that help to support those with a diagnosis of mental illness.
  For most of my life, I harboured some form of suicidal ideation, but didn’t understand why. I often self-harmed, but didn’t acknowledge that my behaviour wasn’t “normal,” even when I began working as a nurse and so knew more about mental health issues. I continued to brush my activities under the carpet, until just over two years ago, when I developed post-natal depression after the birth of my second child. My GP was quick enough to spot it, and wanted to refer me for a psychiatric assessment. I remember vividly the feelings I had when he suggested it. I genuinely thought that to be referred to the mental health services you needed to be experiencing vivid hallucinations or be out of control and not able to function properly. Despite my experiences of meeting people through my work, I had a picture of the “typical” psychiatric patient in my head, someone dirty and unkempt, a drug user, or someone shuffling instead of walking, with no comprehension of what was going on around them. I couldn’t possibly imagine that anyone with a mental health difficulty could look just like you or me, and carry their illness inside them.

- I continued to refuse to be assessed, and also didn’t take the medication my GP prescribed for me. Eventually my husband was called in, and with both their persuasion I agreed to be seen. Even then I assumed that I would be seen and sent on my way, with everyone happy that I was “normal,” as there definitely wasn’t anything wrong with me, was there?

- When I arrived at the Department of Psychiatry it was lunchtime, and the current inpatients were walking along the halls on their way to the dining room. As I watched them I still couldn’t believe that just about anyone could be affected, and even thought that the people I could see were putting on a normal appearance just for my benefit. After talking with the consultant, she said I was very unwell and would like to admit me, but I remained in denial and refused to believe that it would be in any way possible for me to be mentally ill - surely all my symptoms were signs of a weak character, laziness and selfishness, not a genuine illness.
  That first experience and realisation seems so long ago, and I have been on such a journey since then. Continued denial certainly didn’t help the situation, and when I was forced into hospital, my bigoted opinion of psychiatric nurses meant that I was convinced that my knowledge was better than theirs, as I was a “real” nurse, and I refused to let them help me effectively. It is only now with hindsight that I can see just how unwell I was and I am constantly mortified by my behaviour to the staff. Of course, we have since developed a very effective therapeutic relationship and I often apologise for my previous actions - which are dismissed, as mental health professionals continually draw a line in the sand and move on, only concerned with the progress that the client is making, rather than any regression. In my nine hospital admissions in two different hospitals, my opinions have been reversed due to the compassion, knowledge and integrity of the staff. I do not think I ever would have had the strength of character to do what they do, and have come to learn that, just as in every other category of employment, different people are suited to different sectors, different departments, and different divisions of what is described in general as the same job.
  I have met so many people through my experiences, from various mental health and social care professionals, through to people that are experiencing difficulties just like me. I have had late night discussions with people from all social backgrounds, from many different countries, those who are married or unmarried, have children or are childless, are young or old, but who all hold one thing in common - they have experienced a mental health difficulty. They may have “labels” or diagnoses, or they may not. This may be a one off or reactive problem, or they may have a lifelong condition that they need to learn to live alongside. I have learned so much, even though previously I thought I knew it all, and my experiences can only serve to help me in my future work. I had often, as you may have also, heard the statement that 1 in 4 people will be affected by mental illness in their lifetime, but I assumed that it only happened to people with troubled backgrounds, with substance addiction problems or employment difficulties. Yes, mental illness affects many people with these problems. But it also affects many other people. I now finally believe it can happen to anyone, even nurses.”

- “It does help to meet people. I’d love to be able to smile and laugh. I don’t have a family. Friends and family (if you have them) are very important. I’m looking for a step to take me into recovery. I write poetry and I do a bit of amateur acting. I enjoy that.” (Anon. Written for this guide)

- Depression “I had two life changing experiences. They were very traumatic. I think they set me back. I had lost my two main props. I became very isolated.
  I would characterise depression as a feeling of joylessness. Everything is a struggle. Things that gave me pleasure no longer do. I am tired all the time. There is a sense of living disconnected from things. Life is going on outside.
  I have struggled for 12 years. What helps? Well, I do some voluntary work with a number of different groups. I joined two walking groups. I have a number of good friends. These things help to contain the mood. My friends help me in practical ways, but mainly they are just people to share things with. These things give a sort of focus. I like music too and I go to the library. I’m not a great reader, but I browse.

- The worst moment is when I first open my eyes. I feel wrecked. Getting up and getting washed is a real struggle. It gets easier as you get out and about. Very important to do that. Very important to interact with people. It takes the focus off yourself.

- I take three types of tablet. I sleep well but I never feel refreshed. You’re getting a form of sleep, but not of proper quality. There is no permanent lifting of mood. It’s as if you are carrying a burden all the time. My best friend says he doesn’t know how I do it. He thinks I show great courage. I don’t know if I’ve failed to take the right steps to get better or has the system failed me. I admire myself at some level. I feel the psychiatric services haven’t given me the support I needed. I don’t feel I’m being listened to. They talk at me, talk down to me. They have a cold bureaucratic approach. They change every six months. How are you supposed to make progress within that kind of system?
  “It does help to meet people. I’d love to be able to smile and laugh. I don’t have a family. Friends and family (if you have them) are very important. I’m looking for a step to take me into recovery. I write poetry and I do a bit of amateur acting. I enjoy that.”

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