Control

One thing I have learnt over the years that I have suffered with depression is that my illness is closely linked to how in control of my life I feel.  The less in control I feel over what is happening in my life, the more depressed and anxious I become.  This correlation has been proven time and again as my life has rollercoastered along.  Making the decision to end my marriage was massive and the hardest thing I have ever had to do but it meant I had taken control of an aspect of my life that was making me more depressed by the day.  The upswing I experienced as a result of making that decision and my ex-husband eventually moving out (an immensely traumatic time for all concerned though this was) led me to believe that my depression had gone forever.  I had a period of several months when I felt in control of my life, happy and free of all symptoms of depression.

Unfortunately this didn't last and the lead up to my father's death saw my symptoms return.  This control issue explains why I find my son's behaviour has such an impact on my mood.  He has an autistic spectrum disorder, possibly pathological demand avoidance syndrome, which means his behaviour is extremely challenging.  He does not understand the different ways people relate to others; for example he would speak to an adult the same way he would speak to a peer, including any and all swear words, terms of derision or contempt and lack of respect.  If you are under any illusion about how difficult this is to live with, just imagine all of your ideas and norms about how a child should treat his mother have been completely disregarded and you're part way there.  I have always thought of myself as a relaxed, laid-back kind of parent but every time he says "f___ you, bitch" it hurts just as much as the first time.  His condition makes me feel that I have little or no control over our home life as his mood dictates the emotional temperature of the household, no matter what strategies I implement.  Thus my depression is being constantly reinforced by this feeling of lack of control.  Another parent of a child similar to mine summed it up perfectly, "walking on eggshells all the time is preferable to a punch in the face".

Whilst certainly preferable to a punch in the face, always tiptoeing around trying to avoid someone else's temper tantrums is not good for one's mental health.  The harder I try not to upset him and to phrase my interactions with him in as gentle and non-provoking way as possible, sometimes just a simple comment can result in a meltdown - which in his case generally means at best a verbal assault or anything up to and including physical assault and destruction of property.  This ongoing reinforcement of my depression is something that leaves professionals at a loss when it comes to supporting me.  My experience has been that they can see that much of what I go through on a day-to-day basis is intolerable and that the therapies they can offer me won't change that.  Advice tends to be to try and "distance" myself from his behaviour so that it doesn't feel so personal; something that I have so far been spectacularly incapable of doing.

My inability to parent my son effectively makes me feel a complete failure, despite the fact that my other two children are responsible teenagers that I am very proud of.  I feel I have let my other two children down by not protecting them from their brother's behaviour, which I know causes them a lot of distress too. 

Control is a major problem in my life at the moment.  My fiance and his son are moving in with us as soon as their house sale completes.  There has been hold up after hold up and with each passing day I can feel myself sliding further downhill.  The lack of certainty is, quite literally, driving me mad.  We cannot afford for them to move in until the house sale is complete and we haven't even got a date yet so my nerves are frayed to bits.  Added to that we now have no transport as both of our cars reached the end of their economic lives within a few months of each other.  We are trying to pick up a cheap car to tide us over until the house is sold but even that seems to be far more complicated than it should be and after a wasted day spent travelling around the county looking at cars that were potential money pits, I am just about ready to crack completely.  The two youngest boys need driven to school on Monday morning so something needs to be sorted out by then!

Depression and Celebrity

Much has been said today about celebrities and their 'misery lit' autobiographies courtesy of India Knight's column in yesterday's Sunday Times.  I have not read Ms Knight's piece as it languishes behind The Times' prohibitive paywall; I even contemplated paying to read it but it would appear that this is not possible without taking out a year's subscription to the website.  I am almost certain that the last time I purchased a paper copy of The Times I did not have to commit to doing so every day for a year but there you go.

That being the case, I clearly cannot comment on the specifics of Ms Knight's article, although I will, in passing, comment on the unfortunate twitter storm that occurred as a result.  Whoever tweets on behalf of the mental health charity Mind clearly had a bad case of Monday morning-itis and did not really think through what they were tweeting when they appeared to call for followers to attack Ms Knight.  I am certain that the intention was merely to open up the debate but the choice of words was ill-advised at best.  Twitter's 140 character limit is notorious for leading to ambiguity and unfortunately Mind fell into that trap today, I'm sure that this will be a lesson well learnt.

To return to the subject in question, I do not find it at all surprising that many celebrities have suffered with mental illness.  After all, if 1 in 4 people have or have had a mental illness then it stands to reason that mental illness amongst celebrities would be in a similar proportion.  I get the point that these celebrities are writing their books, cleverly released just in time for the Christmas market, purely to make money.  I get the point that having a mental illness could be seen as being the 'in thing' at the moment.  I even get why some people may be getting bored with hearing about the 'struggles' of celebrities who have way more material success than the vast majority of us could ever dream of.

However, I cannot see how someone who has suffered a mental illness could write an honest autobiography and not mention it.  Surely it's a good thing that people who have suffered mental illness no longer feel the need to be dishonest and hide it?  I know that if I were to write a story of my life it would be impossible not to include the depression that has been such a huge presence for the last nine years.

Why should celebrities who have suffered mental ill health feel reluctant to mention it for fear of being accused of 'jumping on the bandwagon'?  Is it because they are perceived not to have any reason to be depressed?  If this is indeed the case then I despair of the stigma around mental ill health ever coming to an end.  Let's get one thing absolutely straight here: depression is an illness; it is not feeling low, having a bad day or even feeling sad for a while.  Depression can take over your life, the symptoms are far more than just feeling sad and no one, not even celebrities, need a reason to be ill.  Can you seriously imagine anyone complaining about celebrities mentioning in their autobiographies that they have survived cancer?  Why then should they feel compelled to remain silent about their depression or other mental illness?

I welcome the freedom with which celebrities talk of their mental illness, even if they then use their experience to make money by writing an autobiography.  If I thought anyone would read it, I would write a book about my own experience - I wouldn't say no to making a bit of money out of my own misery!  The point is, anyone saying they have or have had a mental illness should raise no more eyebrows than someone saying they have cancer, heart disease or diabetes.  Illness is illness, whether mental or physical should not matter.  So if you are one of those who have sighed when yet another celebrity has 'gone on' about their mental illness and maybe passed comment asking "what have they got to be depressed about", please, think again and end the stigma.

Dear GPs

When someone with a history of depression comes to see you, please take the time to actually ask them how they are.  It is not easy to say you are feeling very low, it's not easy to relax your public mask and admit you are struggling.  How much more difficult do you think you make it by a brisk "What can I do for you?"  Clearly you are busy, clearly it is much more convenient for you to just write another prescription and move on to the next patient.  What does it matter that the person you've just hurried out of the door now feels even more worthless than she did when she walked in?  Do you care that she had to hide in the ladies until she had stopped crying enough to go home?  Do you care that she now thinks she is not important enough to be taken seriously?

It is difficult in these days of large surgeries for GPs to get to know their patients as they did when medical practices tended to be smaller.  Surely then it is even more important to ask questions and try and draw out from the patient the true extent of their illness than it was when the patient's demeanour could let you know they were not themselves?  Appearing "fine" is an art perfected by most people suffering mental illness; appearances alone will not tell even the most experienced of GPs how someone is coping underneath the surface.

Of course it would be easy to lay blame with the patient; why did she not just say how bad things are?  After all, the GP is not psychic and cannot be expected to know what is going on in someone's head.  What is the point of going to see a doctor and not telling them how you are?  This point of view totally discounts the difficulty many, if not most, of us feel when admitting we are not coping.  Simply making an appointment to see a doctor about a mental illness is a massive hurdle.  As the appointment gets closer it looms larger and larger in the mind and apprehension means that, by the time the appointment arrives, the patient can be paralysed by their internal turmoil; and yet appear outwardly "normal".

All it would have taken was the right question: "How are you coping?".  Giving an opening is all that is needed.  Let the patient know that they are in a safe place and you want to know how they are really feeling.  Less convenient perhaps, but surely convenience should not be the main focus of a GP's appointment?  Appointment time is limited and GPs often run late so the pressure is always on to keep consultation time to a minimum.  Having someone cry and talk about themselves is messy and time-consuming but if it makes the difference between the patient feeling cared for and valued instead of unimportant, useless and inconvenient is that not worth it?

Looking "fine" does not equate to feeling fine and taking the time to know the difference could not just make a difference to a patient's state of mind; it could, potentially save a life.  Depression may be the most common mental illness but that should not be taken to mean that it is an everyday malady and is not that serious.  Depression can be a severely debilitating and even life-threatening condition and, as such, should always be taken seriously.

So please, GPs, when you have someone sitting in front of you, take the time to ask them how they are.  If you don't ask they may not feel able to tell you and may just leave you feeling worse rather than better.

Where is My Voice?

Mental illness is the poor relation of the health service.  I doubt that I could find a single person involved, whether service user (I hate that phrase!) or mental health professional, that would disagree with that.  A thought occurred to me recently that, glaringly obvious though it is, is probably not often thought about in this regard.  People using mental health services have, or have had, by definition, a mental illness.  Most mental illnesses are aggravated by stress.  How then, are people with mental illnesses supposed to get their voices heard?  How are we to campaign for better, more widely-available services?

For some considerable time last year I tried to join in campaigning against the planned cuts to disability benefits.  I wrote to my MP, I blogged, tweeted and generally tried to shake the general public into the realisation that these cuts would have a significant, detrimental effect on sick and disabled people.  I read article upon article, blog upon blog, trying to educate myself and to find ways of raising the profile of the campaign.  However, unlike many of my fellow campaigners, my mental health just wasn't up to it and my depression started to be exacerbated by the struggle to get people to listen and to take seriously the very real impact the planned benefit cuts would have on some of the most vulnerable people in our society.  I had to back away from the fight, reduce my area of focus and retreat into my own small, self-centred bubble of lonely safety.

My crisis has faded a bit now, although I am still fragile and have good and bad days, so again I have started to blog.  This time however, I have been blogging not about campaigning for better services or cuts to benefits, but about my actual illness; what it's like, for me, to live with depression.  One of the hardest things about depression is trying to decide where, in the spectrum of illness and disability, you actually fit.  I have no physical disability and I look 'fine' so no one coming into contact with me would guess at my illness unless I tell them.  I make no secret of my depression, but neither do I wear a placard announcing it to the world.  It's difficult to demand treatment when you feel that you're 'not ill enough' to deserve it. I know there are many far worse off than me, so how can I justify wanting to utilise a scarce resource (therapy) that others need more?  My own, internal, self-critical voice silences my militant, political, campaigning, demanding, public voice.  My voice is not only silenced by the ignorance and lack of interest of others, stigma and discrimination; my voice is silenced by my own illness and lack of self-worth.

I attend my GP appointments every few weeks like a good girl and just manage to stop myself from the stock "fine" answer to her usual "how are you?".  But do I actually tell her how I am?  No, in my usual not-wanting-to-make-a-fuss fashion, the best I can manage is a self-deprecating "not that brilliant actually".  Why?  Why don't I tell her that most days I have at least one episode of internal screaming and fear it will never stop?  Why don't I tell her that I suppress my feelings so much for the sake of others that I feel I will literally explode?  Why don't I tell her that at least once a day I feel so tired of the struggle to keep going that I just want to give up and stop living?  Why don't I tell her that I spend so much of my time trying to be what everyone else wants or needs me to be that I've completely lost sight of who I actually am?  Why don't I tell her that I cannot look to the future at all, never mind do so with any hope?  My voice is silenced by my own need to 'act appropriately', to 'not make a show of myself', to 'be in control'; my voice is silenced by my own self doubt that my illness is 'deserving' enough to demand better treatment.

I am just one person whose voice is unheard.  How many more people are there, people like me, whose voices are lost?  People who struggle from minute to minute; hour to hour; day to day.  People who have not got the energy, strength or platform to make their voices heard?  Who speaks for those that cannot speak for themselves?  Of course there are charities like Mind, SANE, The Samaritans, The Black Dog Tribe and Rethink Mental Illness that all do excellent, valuable work and try to give us a voice; but we need to be heard as individuals and as people deserving of adequate treatment.  If people suffering cancer, heart disease, diabetes or any other widespread physical condition were routinely turned down for the one treatment that could mitigate their symptoms or even cure them there would be a national outcry.  This happens to people with mental illness every single day and no one knows; no one shouts; no one cares.  Having an invisible illness does not just mean that your symptoms are not visible; it means that you are invisible; it means that your voice is not heard.

Online Support

I have suffered with depression for, I think, about 9 years.  I can’t pinpoint exactly when it started as you don’t just wake up one day with depression; it creeps up on you unawares.  What I can do is pinpoint the exact moment I realised I needed help.  One day I went into the local village shop after dropping the children off at school.  The lady serving that day was a friend and she greeted me, as she always did, with a warm smile and a welcoming hello.  Her easy cheer stopped me in my tracks and I was in tears before I had even made it out of the shop.  I cried all the way home and it was all of a sudden glaringly obvious to me that my reaction to someone else’s happy, relaxed nature was completely abnormal.  I was way more than unhappy; I was so desperately low that someone else being normally, every-day, happy threw my own feelings into such sharp relief that I could no longer ignore them.  I called the doctor as soon as I got home.

I was severely depressed by the time I sought help.  I had been sinking lower and lower each day for months and months and by the time I realised I was virtually catatonic.  My condition was made worse by the fact that I also had extremely low iron levels in my bloodstream, which rendered me physically exhausted in addition to the mental maelstrom I was experiencing.  Each day I got up and got the children fed, dressed and ready for school.  As soon as I’d taken them to school I’d go home and often either go back to bed or sleep on the sofa until it was time to collect them.  After the day I was woken by a phone call from the school fifteen minutes after I should have collected my youngest, I always made sure I set an alarm, even if it was 9.30 in the morning when I went to sleep.  I’d collect the children and then play ‘Mummy’ until after tea, when I’d crash again and my husband would take over for a while.  During this time I tried very hard to ensure the children were cared for.  I always kept the washing up to date and made sure there was food in the house, although going to the supermarket was, and still is sometimes, extremely traumatic for me.  I am conscious though that they did suffer during this, my darkest period as I was not able to interact with them as I should have and I regret that deeply.

The medication the GP prescribed me, antidepressants and iron supplements, gradually dragged me out of the worst of the dense fog but I reached a plateau in my recovery after about six months and I felt I needed more than just medication to help me.  I was fortunate that I was able to (not quite) afford the private psychologist that my GP referred me to.   He was great and really helped me to address some of the issues that were contributing to my illness.  Sadly, part of this process led to the end of my 18 year marriage, which was incredibly painful for all concerned.

I have never returned to that absolute depth of long-lasting, non-functioning depression but nor have I succeeded in achieving the recovery that my GP assured me was possible all those years ago.  I have had periods, some as long as several months, of being relatively symptom free but by and large my depression has stayed with me, colouring all aspects of my life.  I have good days and bad days and have pretty much resigned myself to living with depression for the rest of my life.  I am no longer in a position to be able to pay for therapy and, as therapy on the NHS is virtually non-existent, having online support has really helped me to cope with my condition on a day to day basis.  There is, of course, no joy in knowing that other people also suffer with an illness that drains the pleasure and energy out of them most days, but to know that others understand exactly what you mean when you describe how you are feeling can take some of the pressure off.  Having my feelings validated, affirmed and understood makes me feel more able to keep pushing for the help and support I know I need. 

My illness can often make interacting with people face to face extremely difficult, or even impossible, for me so access to support online has proven invaluable.  I read a lot of mental health blogs and follow many people on twitter that also have various mental illnesses and all of them have helped me at one time or another to feel more ‘normal’ and less isolated.  Online forums, organisations like Mind and SANE and projects like SANE’s Virtual Black Dog all comprise an online community for raising awareness, sharing experiences and providing support.  Certainly for me, support from people who have, or have had, similar experiences to mine means so much as I know it comes from a place of acceptance and understanding.  I am blessed to have a wonderful, close family who try very hard to understand and support me but, as I have written before, sharing too much with those closest to you is not only difficult, it can cause other, knock-on problems that affect your relationships and the dynamics within them.

Blogging is a good way of exploring my own feelings and experiences and to try and make sense of them.  Very often I have started to write a piece thinking it will go in one direction only to discover, as I write, that it veers off at a completely unexpected tangent.  This has occasionally resulted in me revealing perhaps more of my personal experience than I had originally intended, but it almost always helps me have a new insight into how events have impacted on my illness and emotions.  In a way, it’s like the more positive experiences I have had with therapy, in that the process itself can help me to see solutions for myself, rather than having them suggested for me.  I blog mostly for myself, exploring events in writing is a well-known way of coping with difficult situations and emotions, but also for others.  I have had so many positives from reading other people’s stories and from interacting with people online and I hope that reading my blog will make someone else feel that maybe, just maybe, they are not as alone as they thought.