Monday, 3 September 2012

How ill is ill enough?

I read this excellent blog on the Time to Change website about where depression fits into the spectrum of disability, if at all.  The blog made me think a lot about my own illness and my own feelings about the 'legitimacy' of my claim to ill-health.  I know I'm not well, I know the limitations my illness puts on me and my ability to function productively but still I feel embarrassed by claiming to be ill when, physically, I am relatively healthy.

The everyday experience that is my depression impacts on every aspect of my life.  My relationships, my children and even who I am are all coloured by the black cloud of depression.  When I laugh I feel guilty; when I'm down I feel pathetic and, yes, guilty again; when I'm out walking, especially if the street is quiet, I feel self-conscious, unattractive and cripplingly conspicuous; I hate to eat in front of anyone, unless they are also eating and even then I am on edge and make sure I don't eat more than others; I cannot handle confrontation without crying and feeling totally inadequate; if my children are less than acceptably behaved I blame myself and feel like a useless parent; and then of course there is the ever-present, all-pervading, brain-numbing exhaustion.

All of these symptoms and more can leave me unable to function effectively at all some days, others they just make me slower than I ought to be, less able to 'put myself out there'.  I don't work as I am a registered carer for my son, who has an autistic spectrum disorder.  In reality, I hide behind my son's disability.  It's true that it would be very difficult for me to find work as he needs supervision at all times and has to be taken to and collected from his special school daily as we live too close to qualify for transport.  That said, the main reason I don't work is due to my illness, I just don't need to admit that publicly too often as I have the ideal smokescreen of my son's disability behind which to hide my own.

Whenever I try and explain my illness to anyone I feel as if I'm over-dramatising and yet at the same time under-selling my symptoms.  I shy away from discussion of suicidal ideation, even though it's an ever-present demon lurking in my mind, as I don't feel I have the right to admit to feelings I have no intention of acting on.  There are few days that pass without the thought of ending my life, or at least my life coming to an end, crossing my mind at some level.  How legitimately can I tell anyone that when I know it's an avenue that is simply not open to me?  I have very limited experience of suicide but what I have experienced has taught me that it is not something that can ever be confined to the person committing the act.  The ripples of suicide are far-reaching and long-lasting and those left behind suffer far too much for me to ever feel able to take that route.  I have seen the effect that the death of my baby son had on my family.  I have flashbacks to the horrific telephone call I had to make to my parents to tell them and to the heart wrenching, devastating, unbearable, unprecedented sound of my father crying at my son's funeral.  Inflicting pain like that once in my lifetime is enough, I cannot, no matter what happens, willingly do it again.  I know also that children of suicides very often feel guilt for their parent's actions; how could I possibly do that to my children?  My children are approaching adulthood having had a fairly rough time over the years and I am so proud of the people they are turning out to be.  No way can I forestall their personal growth in such a traumatic way.

The removal of the ultimate conclusion of my illness as an option is, in itself, a factor in exacerbating some of my symptoms.  The fact that I cannot have a 'way out' means that I am trapped in this life and that way, as the saying goes, madness lies.  On bad days, when I want to escape but cannot, I can 'see' myself inside my head; running from door to door, searching for a way out where there is none to be found.  Those times are when I feel insanity taking hold of me and the fear and desperation can be unbearable.  The vision I have is literally of my inner self trapped inside a room that is my mind; there are many doors but none lead anywhere safe.  I can feel the panic taking over me as my heart rate quickens and my breathing speeds up.  Left to myself, without someone to hold me and calm me down, I hit myself to stop the pain.  I've never told anyone that, no one knows unless they are reading this now.

When all of my symptoms, difficulties and experiences are written down I can almost believe that I do deserve help and that I am really ill but at the same time I know there are so many people more deserving and more in need than I am and I struggle to feel justified in asking yet again for help.  I managed to secure some short-term counselling earlier this year, despite the assessor telling me that the service I had been referred to was really for those with more "serious and enduring" mental health issues.  I think the reason I was allowed to access the service was twofold; first of all, my reaction to the "serious and enduring" comment was distress and despair and begging that I'd been ill for more than eight years, how much more enduring did it have to be before anyone would help?; secondly, I told the assessor, truthfully I may add, that the last time I had tried to access psychological therapy was a couple of years previously.  On that occasion I had been referred to a psychiatrist who saw me every so often and increased my medication each time because I wasn't getting better.  When I asked to be referred to a psychologist he claimed I was too ill to benefit from therapy.  I struggled to control myself over the course of a few sessions and eventually I was given an appointment with the consultant psychiatrist ... who told me I was too well to be referred as  I would never reach the head of the prioritised waiting list.  The assessor was clearly shocked by this, which I have to admit pleased me as I had always thought my treatment had been unacceptable, and I think this was a major contributory factor in her deciding to allow me to access some counselling.

The counselling helped while it lasted but it could not, or did not, help me with my underlying issues.  It was great to be able to 'off load' to my therapist on a regular basis and to talk through situations I'd found difficult and have my feelings validated but I don't know what, if anything, would help me rediscover my ability to function more effectively.  I often feel like I'm a lost cause and that I'll never recover.  I don't look far into the future and can't picture myself in ten or even five years' time; I just cope with each day as it comes and hope that one day things will get better.  I suppose I feel like I am ill enough to not be well but not ill enough to be judged deserving of any help other than the pharmaceutical variety.  I hope one day that will change, sadly I don't much mind whether that means getting better or worse.


  1. Thank you so much for writing this. You have described exactly how I feel. I'm feeling the deep hopelessness at the moment & although it gives me no comfort to know that someone else is feeling the same way, it is good to know someone else understands the way I feel.

    1. Thank you, I know what you mean, I wouldn't wish this on anyone but it's validating to know you're not alone - and not making it up!

  2. I know the feelings u describe, I live from day to day too, nobody understands, managed to supress stress enough to work 4 hours a day doing cleaning job, always tired and getting less than a person on dole, gov have turned me into zombie, death will come eventually, that is all most can hope for these days.

    1. You're wrong that no one understands, I do, as do others suffering the same illness. You are amazing for managing to work, well done! Someone close to me said that depression is a bit like an addiction, you take each day as it comes and it never leaves you completely but you can learn not to let it take you over, today. I hope you have a good day soon x