What's in a word?

Do you consider yourself to have a disability? A simple question for most people, it appears on most equality monitoring forms.  From dentists to libraries, sports groups and employers, everyone wants to know your race, gender, sexuality and if you consider yourself disabled.  I imagine most people find this question straightforward, its obvious right?  Well, I always hover over that question, my pen moving from yes to no, my mind contemplating what it is exactly I feel, do I feel disabled? And more importantly, what will the impact be if I say yes or no?

Bipolar Disorder is, or can be, defined as a disability under the Equalities Act of 2010 (formerly the Disability Discrimination Act) if it impairs the sufferer in carrying out daily tasks.  For example getting dressed, interacting with people, making decisions.  But Bipolar Disorder is a broad diagnosis and so it must be evaluated for each person, it isn't enough simply to say Bipolar Disorder is a disability- it can be, if it effects an individual in a way that prevents them carrying out normal activities.  On that level then I am disabled.  There are periods of my life when I cannot carry out normal tasks, like dressing, or deciding what to eat.  Or even eating at all.

While logically I can look at the criteria for disability and read all the information provided by mental health charities about mental health disability, I find it hard to reconcile that with myself.  I don't feel disabled, I don't see myself as disabled.  But perhaps that is more to do with my perception of disability, or more likely connected to my need to be independent, to not need help from anyone.  Because that is the issue. Ticking that box, especially in the context of employment leads to the second question- do you require any assistance/help for your disability.  I am still coming to terms with the idea of asking for help, admitting that perhaps I can't do everything everyone else does without a little extra support. Disability for me means admitting that I need help sometimes, not something I find easy.

There is also an element of worrying about the consequences of ticking that box, of saying I am disabled.  What will an employer think when they see that, and worse that it is a mental health problem?  A probable assumption will be that I will have lots of time off, that I won't be able to handle stress, that I might "flip out". Technically employers aren't allowed to ask you medical questions until after interview, but they are allowed to ask the disabled question because it relates to interview. So what do I do- say yes and hope they don't just chuck my application in the bin?  Or no and worry that when it comes to the medical they don't question why I didn't say yes earlier?  I just can't believe that many employers wouldn't discriminate against a mental health disability.

Ultimately the problem with this question is that it is so closed.  A small tick box that requires a yes or no answer.  It doesn't allow for an explanation, all the positives that come from it, what I can do, as opposed to the things I struggle with.  Disability is a much bigger concept than a simple yes or no, it is a broad spectrum of identity, one that I am slowly beginning to accept applies to me.

Won't someone think of the children

Last week I was on Woman's Hour, well my experience was.  It was part of a piece on mental health and parenting prompted by a call from the Care Quality Commission and Ofsted that doctors and health care professionals treating parents with mental health conditions should automatically and statutorily refer them to social services.  The report states that children whose parents have mental health problems are often poorly supported and therefore susceptible to harm.  Mental health conditions are considered to be the same as substance and alcohol abuse and are recommended to be dealt with by social services in the same way.

This recommendation is ridiculous, dangerous and insulting.  There is already an obligation by health care professionals to report anything that they think my be a child protection issue.  This requirement will not help support children, instead it will isolate women right at the point they need help and to talk.  The fact is very few women, or parents, with mental health problems are a risk to their children. Unfortunately, the few terrible instances there are of parents (usually mothers) harming their children due to mental health problems are widely covered in the media.  The reality is that 1 in 10 women will suffer with postnatal mental health problems, but the numbers that will harm their baby are tiny.  However, many women with postnatal depression and psychosis are terrified of speaking out and telling someone how they feel, for fear that they will be deemed an unfit mother and the baby will be taken away.  This is far more dangerous for the mother and baby than the mental illness itself.  Putting a statutory requirement on doctors to report women for mental illness will surely just make women more afraid to speak out about how they are feeling.

After my daughter was born and I began to become unwell, the perinatal care team were excellent in their care for me.  They understood the complexities of postnatal mental health, monitored me, and asked all the right questions.  They considered me in no way a risk to my children.  However an inexperienced Community Mental Health Nurse, without visiting me or talking to me, referred me to social services.  The anxiety and stress this caused us was enormous, and social services agreed that I was not a risk to my family.  Social services are the demon child snatchers that people often portray, but until you have been there, considering the idea that your every parenting decision, emotional state, and love of your children will be monitored, it is difficult to understand the fear.  I have always had a good understanding of social care, I have worked with them supporting families.  But when I got that phone call, in the midst of my unwell mind, I was paralysed with panic and fear.  I had always worried that people thought I shouldn't have children, because of my Bipolar, and now it was going to be tested.  A quick conversation and the worry was over. There was nothing social services needed to do or could do.

And that is another issue.  After the shock and panic had subsided I asked for their help and support.  I was on the verge of being admitted into the Mother and Baby unit, my family could do with any support that could be offered.  Except there was none.  Social care couldn't do anything for us, we qualified for nothing.  My deteriorating mental health was not a factor in deciding support for our family, income and employment was.  Because my husband works full time is a reasonably well paid job (above national average, but still quite a bit below higher tax rate) we were entitled to no help with childcare for my son, no support for mu husband as my carer.  If he had not worked then we would have been entitled to much more.  One argument  for the automatic referral to social services is that children and families receive the support and care they need.  But unless there is a planned injection of money into social care services, this is not going to happen.  They are an overstretched service as it is, unable to support all but the families most in crisis, the ones where children are in danger of harm or neglect.  If you care for your children and are trying your best, but simply need extra help in coping they cannot help as they do not have the funds. Therefore the referral is a pointless exercise which will only lead to women hiding their feelings and worries through fear of losing their children.

And as to the categorisation with substance abuse, I find this insulting and a further opportunity to stigmatise mental health conditions.  I am not disregarding alcohol and drug abuse as something that requires help from health professionals or blaming people addicted as "bringing on themselves", but mental health conditions are different in the ways in which they effect families and the sufferers and should not be lumped together in this way.  If anything the children of mental health sufferers should perhaps be seen as young carers, in the way that other children of disabled parents are. As often is the case this report shows that mental health concerns are given less support than physical health concerns.  Families coping with mental health conditions do need more support, but a automatic referral to social services is likely to be counterproductive and in fact deter women from coming forward and seeking help for their conditions. Had I thought I would be referred I would have said nothing of my feelings, my hallucinations and my need for help.  And that would have been a very bad thing.

Pain is temporary, giving up is forever

Sometimes you have to admit that you need help.  I am a fiercely independent person, I like to be in control and I very rarely admit that I need help.  But, I have to admit defeat and say that once more this illness has weakened me.  I won't say beaten, as there is still some fight in me, although it is diminishing by the day.

Eight weeks ago I gave birth to my beautiful daughter.  Her birth was wonderful, and initially I rode on a high of hormones. I did everything by my plan, carefully managed by my team. I started my lithium five days post delivery, I met regularly with CPNs and attempted to manage my sleep as best as possible. But sometimes even when you do everything right the darkness slips in.

Gradually at first, I started to feel the signs of a low.  Hopelessness, crying, inability to make even small decisions.  To begin with everything was blamed on tiredness, on the responsibility of looking after a toddler and a baby.  But the feelings took hold of me, the sadness overwhelming.  Finally a visit to family, where meals were cooked for me, the baby held, sleep had.  And yet the sadness prevailed.  On the journey home, when the tears were still trying to come, I realised that I could no longer blame these feelings on tiredness, relentlessness or the normal feelings associated with caring for children.  I am good at hiding these feelings, and it is possible that no one noticed to begin with.  But despite the best efforts of my team, the intrusive thoughts are taking over and the illness is gaining momentum.

And so today I will be admitted to the Mother and Baby unit with my daughter.  Hopefully it will be a short stay, where I can rest, get stabilised on additional medication and start to get well again.  I am anxious and scared at what to expect.  At having to relinquish some of the control to a team of people I don't know. But I have to do this, not only so that I am no longer a danger to myself, but more importantly because my children deserve a well mother.  Not one weighed down with misery and tears. I want to be able to laugh with my son again and delight in my daughter smiling.

A part of this feels like defeat, like admitting weakness.  That I can't do what thousands of other women do everyday.   I have to acknowledge that I am ill and I need help getting better.  If I had broken my leg I would get it fixed, and I so badly want to be fixed. Suicide is the number one cause of maternal death in this country, and I cannot be part of that statistic. I will not let this illness beat me.

The title comes from Lance Armstrong (despite the drugs scandal I like the quote).  In full he says  "Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever."  This may last weeks or months, but with help it will subside.  I cannot and will not give up. 

Living with the consequences

Within writing about mental health there is a lot about symptoms, feelings and experiences when a person is ill.  What it feels like to be depressed, to live with mania or stress.  There is less discussed about the consequences of these periods of time on the rest of your life. I mean the long term consequences of periods of mania and depression, that leave scars in your everyday life long after you are well and healthy again.

There is a legacy of emotions from both these periods that can impact on your work and relationships.  Depression and mania can mean long periods of time off work, leading to absence reports and constant monitoring of your attendance.  In turn this may lead to judgements on your ability to do your job, or a nervousness amongst employers over "what if" you were to be ill again.  This inevitably has effected my choices in terms of work and I am fairly certain influences my employers judgements of me.  I can never shake off the periods of absence, no matter how much my attendance improves when I am well.

But for me the greatest consequences are personal and financial.  These are the things that hang over me, that continue to influence my life long after any period of illness.  During one now diagnosed manic phase I ran up close to £20,000 in debt over about one to two months.  I have very little to show for this, except four years of a debt management plan, a destroyed credit rating and very little confidence in my ability to ever get credit again.  This financial legacy has had lasting consequences for me (and my husband) in the seven plus years since it happened.  Our mortgage is high and not particularly favourable; the years spent paying off the debt were lean and stressful; our honeymoon was four days in the UK and a family holiday seems years away.  It meant only six months maternity leave with my son, and will mean the same this time round as we have never really recovered enough to save and invest like other thirty somethings.  It means I cannot go part time to spend time bringing up my children, or even consider a lower paid job.

In personal terms, no matter how much people try to understand your condition, depression and mania can destroy and damage relationships.  High spending, alcohol and drug misuse and sexual promiscuity are common in mania and not conducive to maintaining relationships.  I have burnt many bridges in my time through my behaviour and often still feel shamed at the things I did.  Depression is draining for all involved and often leaves lasting resentment for partners and family.  The unpredictability of living with someone with mental health issues, such as Bipolar must be exhausting at times and inevitably has an impact on how that person is viewed.  I have talked before of separating the illness from the person, but when the illness creates personality changes it is hard to do.

I am eternally grateful for the support and love that my husband and family give me when I am ill, but more than that I am in awe of their ability to live with the long term consequences of my behaviours and forgive my discrepancies.  

Better late than never

I have changed Psychiatrist as part of an NHS reshuffle (read-money saving attempt).  My meeting with the new doctor seems to have highlighted some issues with the old one.  As I had already thought I should have been referred to the Perinatal Mental Health team at the beginning of my pregnancy so that they could cover my care, liase with midwives and consultants to ensure I stay well both during and after my pregnancy.  Apparently they have been awaiting a referral from my previous Consultant that never materialised.  Unfortunately if you have ever accessed mental health services, this won't come as much of a surprise.  I have slipped through the net many times, in fact would likely have been diagnosed a year earlier had another NHS reshuffle led to a referral being lost.

However, this meeting at 32 week pregnant has thrown me into a bit of emotional turmoil.  My new Psychiatrist has outlined (as should have been the case) the risk factors and dangers of pregnancy and postnatal for women with Bipolar.  We have a 40-70% chance of relapse in the first 12 weeks.  This could be either mania or depression, added to this a 1 in 2 chance of developing puerperal psychosis (this is compared to a 1 in 500-1000 chance in women without a history of Bipolar).  These are scary statistics.  The depression experienced postnatally by women with Bipolar has a much more rapid onset than postnatal depression, and more frequently leads to suicide.  Mania is very common in postnatal women due to sleep deprivation and is very much more disruptive and dangerous than depression.  Psychosis is the scariest.  A complete block from reality, hallucinations, believing that your baby or family are in some way dangerous to you. 

My appointment involved a discussion of all these, and a worst case scenario outline of what might happen (admittance to a mother and baby unit, psychiatric ward, crisis care team).  Explained in the first trimester it may have been easier to here.  With eight weeks to go it has left in a some what emotional state of anxiety.  I will write a postnatal plan with the Perinatal team, which will be shared with all my carers.  This will involve plans for all eventualialities and how the postnatal period will be managed. Top of this list is the question of medication. I have taken lithium for nearly two years before this pregnancy, an anti-psychotic drug that works very well in Bipolar, but no one knows why or how.  I have been stable and functioning.  But it is not compatible with breastfeeding, it is a metal and harmful substance that can casue serious damage to liver, kidney and thyroid.  It takes six to eight weeks to work as the levels are based on individual's metabolism.  I have some difficult decisions to make.  I want to breastfeed, I want to be able to feed my baby and do what my body was designed for.  My medical team want me to formula feed and take medication from the outset.  For me it feels like another way that this condition has impacted me and at best seems unfair at worst has made me sob with grief at having this taken away from me. 

Mental health in pregnant and postnatal women is still a very much neglected area of medicine. Some NHS trusts do not have any dedicated mother and baby units, Perinatal teams or specialists midwives.  And yet suicide is the biggest cause of maternal death in the UK.  Women are twenty times more likely to be admitted to a psychiatric unit in the 12 weeks following birth, than in the two years before or after.  The last few weeks of my pregnancy are likely to be filled with medical appointments, care plans and anxiety.  I want to be well, look after my baby, have happy memories of becoming a family of four.  But overshadowing this is a long list statistics and possibilities of what might happen. 

Is there a stigma?

When I first published this blog many people commented to me that I was very brave sharing my mental health problems in this way.  At my recent consultant appointment, the registrar asked if it was ok to write in my notes that I was seeing a psychiatrist in case someone read it.  I have always justified my relatively open attitude to my bipolar by comparing it other chronic medical conditions, like diabetes.  If I wouldn’t be ashamed of talking about something like that, why should I be ashamed of being bipolar? 

Mental health is different though.  Rethink mental health and Mind are currently running a campaign called “Time to Change”, encouraging people to be more open about mental health in an effort to reduce the stigma and discrimination.  Their studies show that 9 out of 10 people with mental illness reported a negative impact of stigma and discrimination.  Their aim is to reduce discrimination by 5% and to get people talking about mental health more. 

Why is mental health so difficult to talk about?  Possibly it is a belief that it isn’t a real illness, isn’t caused by a bug or a virus.  Perhaps because it is hard to diagnose- you can’t look at bipolar or depression under a microscope.  Or maybe it is that is about feelings and emotions and somehow being weak.  Whatever the issue it does need to change.  There are so many stereotypes of mental illness that have relatively little basis in fact. 

I have definitely experienced the stigma attached to having bipolar, and possibly discrimination.  Why shouldn’t I have my medical condition and treatment on my antenatal notes, why do receptionists feel the need to whisper or use hushed tones (in the manner of old ladies using rude words).  Many people do treat me differently when they know. Often interpreting everything through the view of bipolar- not accepting that sometimes I might just be sad, angry, happy etc.  I have lost friends since my diagnosis, and through being ill.  Not suddenly, but gradually over time, people perhaps can’t wait for you to “pull yourself together” or cheer up.  Or they just don’t know what to say.  Absence from work for mental health reasons is rarely seen as acceptable.  I worked with someone once who had a chronic lung condition, which often led to short and extended time off work. This was never met with anything but sympathy and support.  I can’t say I have always been so lucky.  And I don’t mean from employers, I am lucky in that regard, but from colleagues.  Mental illness is a weakness, one we are supposed to be able to fix ourselves.  As to discrimination, I can’t pinpoint any examples, but I can never be sure that a job application won’t be immediately binned when they see my condition. 

I don’t think there is the same taboo attached to mental health as there used to be, it is certainly much easier to talk about now than in the past.  But the stigma is still there, still needs addressing.  So I challenge you to sign up to the Time to Change pledge- talk about mental health. 

http://www.time-to-change.org.uk/home

If life gives you lemons...

...make lemonade, says the proverb. It is very easy to pick out the negatives of bipolar, to mull over the limitations it places on me, the disadvantages of my condition. However, recently I have been trying to consider the flip side, the positive personality traits I am bestowed with due to my illness. What good or positive can I spin out if this hand I have been dealt?

Well I can be very passionate about issues. All sorts of issues, sometimes I just like to discuss, no matter the topic!  Perhaps this enthusiasm, the passion with which I can decipher an issue and present it to others stems from my different brain wiring.  Maybe my reflective nature, my need to deeply consider things from all angles is down to the way my brain chemicals function.

History is littered with people suffering from bipolar who have made significant contributions to the arts, politics and literature. Van Gogh was apparently bipolar, with some of his greatest paintings, the result of his high manic states. Others include Winston Churchill, Buzz Aldren and Robin Williams. Bearing in mind only 1% of the population have a diagnosis of bipolar, perhaps there is something positive about this condition, creative, inspiring that drives so many sufferers into  influential spheres of society.

Don't get me wrong, if I could make it go away I would, without a second thought. I am a Christian and can't deny that I haven't struggled many times with why I have been made in this way. Why should I have to deal with this condition, its limitations. Why would I be created this way. Looking at the positives helps with this, perhaps it is integral to me and my purpose in life.  Perhaps having bipolar holds some potential, a creative, spiritual sense that is essential to my journey. Instead of  disorder maybe it is a potency, a potential that can be constructive and just maybe outstanding.