Motherhood, mental illness and beyond

Posts tagged ‘mental health’

Au revoir

Some of you may have realised that I haven’t been around for a while, either here or on Twitter. If you’re a regular reader of this blog you may remember that back in the summer DH and I were reported to the NSPCC and Children’s Services by a former friend who hadn’t been in touch for over a year but who read this blog. Although we were swiftly cleared of any wrongdoing, the experience has scarred us both deeply. I no longer feel comfortable blogging and tweeting about my mental health, knowing that my words could once again be turned against me. I’ve tried to continue blogging but I just can’t be open any more – I’ve drafted countless posts, and deleted them all because it doesn’t feel safe to publish my thoughts, my distress or my struggles.

It’s the same with Twitter. Knowing that this former friend is probably still watching my account makes it exceedingly hard to see Twitter as the (generally) safe haven that it once was. I can’t be honest and open any more, and that makes it very hard to interact with people who are fully aware of my problems and who are kind enough to care how I am. I tried having a locked account for a while but it didn’t feel right.

Because I no longer have the twin outlets of Twitter and blogging to help and sustain me, in terms of mental wellbeing I have to focus on self-care and looking after DH. This means that although I care about the friends I’ve made online, I don’t have the strength to support them as well as look after my children, husband and of course myself. To those friends I want to say that I’m sorry. I feel hypocritical, for having to abandon you when I’ve been abandoned by so many so-called friends and know how devastating it can be. But my focus has to be on my family and myself right now, because without being able to open up and interact honestly online, my support network has become severely diminished. I wish you all the very best, and hope that you continue to help and support each other. I cannot thank you enough for everything you’ve done for me.

I hope that this isn’t goodbye. I hope that it’s just au revoir, until we see each other again. But for now, although I’m having to type this through the tears, @SamCandour and this blog will lie silent.

So what do you do?

I really hate this question. At social gatherings, in the school playground, chatting to people at the park, occasionally even when I’m doing the shopping – it keeps popping up like a particularly persistent meerkat. And I never know how to answer it. “I’m unemployed” or “I’m a stay-at-home mum” are both true statements but they only cover part of what I do. The same goes for “I do volunteer work” and “I write”. The trouble is that people usually only ask this question as a way of politely extending a conversation or so they can mentally file you in the appropriate box. They want a brief, concise answer and I don’t have one.

So what do I do? Well, the main thing I don’t do is have a paid job. I haven’t since the birth of my daughter in 2009, when I had such severe PND that I was unable to return to work at the end of maternity leave and eventually lost my beloved job as a result. Since then my mental health has never been good enough for me to return to formal employment. Many (including myself in harsher moments) would label me a benefits scrounger, someone spongeing off the state and hard-working taxpayers.

And yet I work hard. I work hard to support and care for my husband as he struggles with bipolar disorder and what can sometimes be crippling anxiety. I work hard to look after our two children, ensuring that they are healthy and happy. I make sure our meagre income covers the bills as well as paying for healthy food and adequate clothing for a pair of ravenous, growing youngsters. I keep our home clean and relatively tidy. I do voluntary work a couple of mornings a week, I write, I take the children to playgroups, parties, parks, the beach, days out. And I do all of this while dealing with my own mental illnesses (and hiding that fact from the children), and suffering from chronic back pain. Of course DH does these things too when he can but there are often times when, through no fault of his own, he can’t.

It’s hard. It’s really bloody hard. I’m lucky to have supportive family close by who help out when I need them. I have supportive friends at the end of the phone or online, and a brilliant GP who always makes time to see me if I need her. But I don’t fit into the neat little box that society would like me to. And I still don’t know how to answer the question.

Am I on your radar?

Trigger warning: suicide

Today the Samaritans announced the release of a new, bespoke app called Samaritans Radar. This will email people when someone they follow on Twitter is discussing depression, suicidal thoughts or similar key words. Their website states “Our App searches for specific words and phrases that may indicate someone is struggling to cope and alerts you via email if you are following that person on Twitter. Radar will then offer you guidance on what to do next.”.

I have no doubt that Radar is well-intentioned but it has caused a fair bit of upset in the mental health community. There are numerous reasons for this disquiet, not least that amongst several different press releases there isn’t one aimed at mental health service users (ie those of us who are actually mentally ill).

For me, there is a difference between someone encountering a distressed tweet and responding, and someone who is actively monitoring you for such tweets. The latter feels invasive and intrusive. It’s not dissimilar to the contrast between bumping into a friend in the high street, and following that friend down the high street so you can engineer an encounter. There is also a risk that this app could be used to target vulnerable individuals; I have at least one friend who is outspoken about her mental illness and receives all kinds of abuse as a result, even (sometimes especially) when she is in crisis. What a boon this app is for people like her abusers!

Another objection I have is that I, as the potential subject of this app, have no way of knowing who is monitoring me through it. In fact the Samaritans proudly trumpet that “The people you follow won’t know you’ve signed up to it” and having carefully read the press releases there seems to be no way I can stop people using the app to watch me. This makes me profoundly uncomfortable. Another disconcerting point from the press release is this:

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Why do the Samaritans feel the need to store a count of flags against my (as someone being spied on through their app) Twitter ID, what purpose does this serve and what will they do with such data? In addition, why do they want to store the identities of a Radar user’s friends? And why shouldn’t I know who’s using this app to monitor me so I can block them?

I know some would say that as all my tweets are in the public domain I have no grounds for concern; that people who follow me are watching me anyway. To a degree this is true. But when I tweet about feeling depressed, hypomanic, anxious or suicidal the last thing I want is to know that emails are immediately being sent to anyone who wishes it. The support and kindness I’ve received from Twitter users is lovely but it’s by chance when someone has seen something I’ve said, not because someone is targeting me to see when I’m in distress.

I’ve already seen several people say that they now feel unable to be open on Twitter as a result of this app’s launch and I have sympathy for that stance. It’s going to be like having someone watching over your shoulder all the time. It makes vulnerable people feel more vulnerable and more likely to suffer in silence instead of opening up. If there was a way to prevent your followers from watching your account with this app then I think my objections would largely disappear. But as it stands all the Samaritans have done is make me feel less safe, not more. Please, if you follow me or anyone else with mental illnesses on Twitter, do not utilise Samaritans Radar without asking permission.

It’s been a while…

(For the background to this post please read Consequences).

Well, after a month or so without blogging or feeling comfortable talking openly about my mental health on Twitter, I’ve had enough. I refuse to hide any more. The woman who reported us has contacted me in order to confess; it seems that she genuinely (however misguidedly) believed that the children truly were at risk. Thankfully Children’s Services have made it very clear that they have absolutely no concerns and have indicated that they will treat any future complaints from this woman with caution.

So after having a break in order to think things through, I’m back. Through the unwavering support of pretty much everyone I know, whether online or off, it has gradually become clear to me that the importance of speaking out against the stigma of mental illness far outweighs the risk of another misguided report to the NSPCC. That this happened at all (despite the fact that I am stable, that DH and I are both in regular contact with healthcare professionals and that we have family close by who both help and support us) merely shows just how far we still have to go before mental illness is treated the same way as physical illness.

Of course, the irony of all this hasn’t escaped me. My writing about mental illness and its stigma has led to DH and me being accused of being unfit parents because of the stigma surrounding mental illness. It’s almost funny. Almost.

Consequences

Recently I wrote about being reported to the NSPCC and consequently Children’s Services in these two posts: The Letter and The Letter – part 2. If you don’t have time to read them, the short version is that the NSPCC received 2 anonymous reports from someone who was concerned that my and DH’s mental illnesses meant that our children were at risk. Children’s Services investigated and quickly concluded that the reports were groundless. That, I hope, is the end of the matter.

Except that it isn’t, not really. Although I choose to believe that the reports were made due to genuine (albeit misguided) concern rather than malice, knowing that someone has read my blog and my tweets and concluded that I am an unfit mother, DH an unfit father, has been profoundly distressing. For me it has caused heightened anxiety and stress-induced insomnia, DH is struggling with an abrupt plunge into low mood. I hope that in time these will pass, and of course the children are still entirely unaware of the whole situation and its effects, and will hopefully remain that way.

I have always prided myself on being open and honest about my mental health, both here and on Twitter. Stigma is increased by ignorance, and by speaking out I hoped that in a small way I could help reduce that stigma and the alienation that many people with mental illnesses suffer. But to have that honesty turned against me and wielded as a weapon has been a horrifying experience. I’ve never hidden the fact that I find blogging to be an extremely therapeutic way of dealing with my illnesses, both mental and physical. I have also found a wonderful support network on Twitter, where I can be honest and speak of my experiences to those who understand and empathise as well as to those who really have no understanding of what mental illness can be like. In return I’ve been able to offer sympathy, advice and comfort to others who struggle with their mental health. But I’m not sure that I can continue to do so.

Despite our swift and complete exoneration by Children’s Services, this experience has left its mark. I no longer feel safe blogging and tweeting honestly about how I am, how my day is going, how DH is. Even as I write this post I’m wondering whether it will be turned into a stick to beat me with, whether it will prompt yet another report to the NSPCC. I have lost my sense of safety, of refuge, and of course that means that I have lost my online support network. This is no trivial thing; in the past the support I’ve received from individuals online have literally made the difference between life and death. But now that’s gone. I feel watched, I feel harassed and I feel as though my honesty has endangered the happiness and wellbeing of my family.

I don’t know whether these feelings will fade as time passes but I certainly hope so. I will miss the catharsis that blogging can provide and I will miss being able to interact with the mental health community in a meaningful way. It’s been very important to me that I speak out about mental health issues and I hope that I will be able to again, but for now my voice has been silenced.

The letter – part 2

A week ago I wrote this post after discovering that DH and I had been reported to Children’s Services. I am pleased to say that today I have spoken to Children’s Services again and, despite a second complaint from the same individual after they read last week’s post, they will not be investigating further. In fact, having spoken to the healthcare professionals who regularly see DH and I, Children’s Services are confident that our children are at no risk whatsoever. Of course I’m sad that the NSPCC and Children’s Services had to waste their precious time investigating groundless complaints but in a way I think it’s a good thing; it’s far better to check out every report than for children who really are at risk to be overlooked. Social workers have a seemingly neverending and often thankless task but their work is invaluable.

The main cause of the calls to the NSPCC seem to be (and I’m quoting from what the social workers have told me) that DH and I have mental illnesses, that I am open about my mental illness, that our children have poor nutrition and most recently that we have “so many bad days” that we are “on the dole”. Now, our children are obviously well-fed and being on benefits is no crime, despite being embarrassing or shaming to admit to at times. Equally, having a mental illness isn’t a crime but there is a lot of stigma and many people don’t really know anything about it. That’s partly what prompted me to start blogging, because I was tired of hiding my mental illness when I didn’t feel it was necessary to hide my physical illness.

I will admit that this incident has made me wonder whether I should continue blogging and tweeting so honestly, or whether I should stop. After careful consideration and discussions with numerous people I’ve decided to carry on as normal. If nothing else this whole sorry episode has demonstrated just how much ignorance there is about mental illness, and if I can help people to be better informed then that can only be a good thing.

To the person who reported us I would like to say this:

I’m sure that you’re happy to hear that my children are well-cared for and not at risk. It’s a shame that you felt unable to approach DH and I before speaking to the NSPCC; we’re nice people and can take criticism, especially if it comes from a place of genuine concern.

If you would like to learn more about mental illness you can access some great information at Time To Talk and Mind, while the Mental Health Foundation has a good explanation of stigma here.

I hope your mind is now at ease as far as my children are concerned. Yours,

Sam.

The letter

For the last 12 days DH, the children and I have been on holiday. We’ve had a wonderful time staying with DH’s family and having lovely days out. Today we came home and once we’d brought everything in from the car I sat down to check through the post for anything that needed urgent attention. And there it was.

Children’s Services have received a referral from the NSPCC. The referral has raised concerns for your children’s welfare. Please contact the Children’s Access Point on the above telephone number so we can discuss the matter further. You will need to speak to the duty social worker.

Hands shaking, I showed the letter to DH before shutting myself in the bedroom to make the call. The duty social worker was very pleasant and explained that someone had contacted the NSPCC anonymously to report that they were concerned about my children’s welfare. Apparently the complaint was very detailed but of course the social worker couldn’t tell me too much in case it helped me identify who the individual was. Which is fair enough. What he did say, though, is that this person was very concerned because a) DH and I both have mental health issues, b) I am open about my mental health “without considering the impact it may have on the children’s welfare”, and c) because the children suffer from “poor nutrition”.

I have to admit, I find the third one mildly amusing. Anyone who has seen how healthily my children eat and how much they can pack away (second helpings are common and third helpings have been known on occasion) knows that they’re definitely not malnourished or lacking in any kind of nutrition. I’ll be honest, a lot of the time they eat better than DH and me! They’re both slender but full of energy, and no-one in a position of responsibility (doctors, teachers, children’s centre staff etc) has ever expressed any sort of concern about their wellbeing.

I gave the social worker a brief summary of DH’s and my mental health: our diagnoses, that we’re both stable on medication, that we both see our GPs regularly and that DH sees his psychiatrist every month as well as going to support groups each week. I explained that we both have supportive families who we see regularly, as well as some very supportive friends. I gave the social worker the contact details for our GPs and DH’s psychiatrist, and we both gave full permission for them to tell Children’s Services whatever they need to know.

Now, a few hours later, the shock has worn off and to be completely honest, I’m not angry so much as sad. I’m sad that someone who seems to know us had concerns about our children but didn’t talk to us about it. I’m sad that once again the stigma that surrounds mental illness has touched our lives; would the person have called the NSPCC about my physical illness, which actually has far more of an effect on the children? I doubt it. I’m sad because the comment about the children’s nutrition makes it seem as though this is a malicious complaint rather than someone who’s genuinely concerned but perhaps a bit misguided. But most of all I’m sad because Children’s Services are now wasting their precious time investigating me and DH instead of spending it helping children who are actually being abused, neglected and ill-treated.

I have absolutely no intention of keeping quiet about mental illness. If anything, this has made me even more determined to speak up about it. I disagree that being open about mental illness will have a negative impact on my children; I think that hiding our illnesses and lying about them would be far worse. Particularly when there is evidence to suggest that depression and bipolar disorder may be inheritable! The children aren’t aware of mental illness yet but as with everything else we will answer the children’s questions honestly and at an age-appropriate level when they’re asked. And we will continue to teach them to accept everyone regardless of illnesses, disabilities or any other differences.

I’m confident that after the investigation has run its course the complaint will be dismissed. Of course there’s still a small voice whispering “But what if they decide to take the children anyway?” in the back of my mind; this is precisely the kind of situation that my anxiety is centred on but I’m doing my best to ignore that. My children are happy, healthy and well looked after, and I know that social workers aren’t the big bad child-snatchers that they’re often suggested to be. I hope that this will be resolved quickly, and that whoever called the NSPCC can rest easy knowing that my children are absolutely fine.

Recover or else?

This morning I read this news story with a mixture of exasperation, anger and fear. The British government, having already made life close to unbearable for disabled people, are now turning their attention to another extremely vulnerable group: those with mental illnesses. It seems that spending 15% of the welfare budget on the sick and disabled is unsustainable (but apparently spending 21% on low income workers and 42% on the elderly isn’t a problem). So government ministers have come up with the idiotic brilliant idea of forcing people with depression or anxiety to attend therapy, and stopping their benefits if they’re unable to.

In response to this article I dashed off several quick objections to this proposal:

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It’s proven very popular on Twitter, having been retweeted over 200 times now, but now I’d like to explain these points properly.

1) You can’t force people into therapy and then expect them to get anything out of it. Whether it’s cognitive behavioural therapy, talking therapy or anything else, the individual has to be willing and able to undergo what can often be a traumatic and upsetting experience. Forcing someone who isn’t ready to go through this would be highly counter-productive, exacerbating the problem and further alienating the ill person.

2) No-one will trust a therapist who they know is focused on declaring them fit to work, come what may. Just as you wouldn’t automatically trust someone you met on the street, you don’t automatically trust a therapist. A relationship has to be built, slowly and cautiously, and trust must be earned. If you know that the person you’re supposed to be baring your soul to isn’t focused on what’s best for you but only on telling the government that you can work, that trust will be non-existent. In addition, the basic principle underlying psychotherapy is that clients give voluntary (ie not forced), informed consent; would therapists even be allowed to treat patients who attended under duress?

3) In most areas there’s a long wait for talking therapies and CBT, often a year or more. Are the government going to conjure therapists out of a hat as though they’re well-qualified rabbits? When funding for mental health services have already been drastically cut, how can thousands more people be forced into a system that’s already bursting at the seams?

4) “We know that depression and anxiety are treatable conditions”. Wrong – they *can* be treatable conditions. There are all kinds of depression and anxiety and some of them are permanent. Whilst most of the time depression and anxiety can be transient illnesses, passing with the right treatment, for some they are merely manageable with treatment and don’t go away. Being forced to attend further therapy is only going to make these illnesses worse.

5) “Cognitive behavioural therapies work and they get people stable again”. Wrong again – they *can* work. For some people CBT is an utter waste of time, as I can attest. There is no panacea for depression and anxiety, no one-size-fits-all cure. If there was then we wouldn’t be having this discussion!

6) Most of the welfare budget actually goes to the working poor through tax credits. Instead of targeting the ill and vulnerable yet again, why not legislate for companies to pay a living wage instead of having to top up incomes via welfare? As I wrote at the start of this post, only 15% of the welfare budget is paid to those who are sick and/or disabled. Why aren’t the government ensuring workers are paid a proper living wage, instead of having to pay 21% to people who work but are paid so little that they’re still impoverished? It couldn’t possibly be because vulnerable groups are easier to target, could it? Or perhaps ministers have fooled themselves into believing their own “scroungers” rhetoric.

7) Oh and let’s not forget the billions of pounds lost through legal tax avoidance, why not close that loophole while they’re at it? The Telegraph article states that “Estimates based on government figures suggest the state spends up to £1.4 billion a year – more than £3.5 million per day – on ESA for these claimants with mental health issues”. But other government figures have shown that over £5.1 billion a year is lost through tax evasion. The government is targeting the vulnerable instead of those who think they’re too good to pay taxes.

Many ill and disabled people have died within 6 weeks of being declared fit to work by ATOS, the company contracted by the UK government to reduce disability payments. How many more will die if this ill-considered idea is actually put into practice? Sadly we may soon find out, as pilot schemes are being rolled out in the near future.

One last thing. You are only one illness, one accident, away from becoming disabled yourself. 1 in 4 people in the UK will have a mental illness at some point in their lifetime. Although this government’s barbaric policy of targeting the ill and vulnerable may not affect you today, there’s no guarantee that it won’t tomorrow.

Gratitudes

Life is difficult at the moment, for a number of reasons. DH is still struggling with his bipolar disorder; his psychiatrist is great but he hasn’t found the right balance of medication yet. So I never know who I’m going to wake up with – my husband, or a man who’s as excited as a small child at Christmas, or  a man so depressed and morose that he can barely move let alone speak. Two of these three options are exhausting to live with and look after.

My mental health, never great at the best of times, is suffering because I’m focusing on DH and the children. I know the aeroplane oxygen analogy; you take care of yourself before others, because you’re not use to anyone if you can’t breathe. But I am the only one holding things together right now and I’m damned if I’m going to let DH suffocate in his illness. Nor am I going to neglect the children purely to look after myself. I’m managing. My back is as problematic as ever, particularly when I forget my walking stick. Money is ridiculously tight. My bingeing is out of control.

But I have so much to be grateful for. Yes, life is stressful and tiring right now but I’m alive. The children are alive and DH is alive. We’re relatively healthy and have access to understanding and helpful doctors. My parents and sister are wonderfully supportive and helpful, as are DH’s family. I have a couple of fantastic friends, and loads of good friends on Twitter.

I have 2 wonderful, funny, kind, sweet and healthy children (even if their bickering does drive me crazy sometimes!). We have a roof over our heads and food to eat; we live in a nice area with easy access to the sea and the Downs. The weather is temperate, the people are friendly and DD’s school is amazing.

I have so much to be thankful for that I should really focus on the positive aspects of life, instead of the negative. I am lucky to have all the things that I do when so many in the world have to manage without.

Changing minds

This post is one I’ve been meaning to write for a while, but I’ve finally got round to it today after seeing the #ChangingMinds tag on Twitter. The question posed was what do you wish more people understood about mental illness – so here’s what I wish more of my friends and family understood.

We all have mental health, just as we all have physical health. Some of us just aren’t as healthy as others.

1 in 4 people will have a mental illness during their lifetime. It’s that common.

If you ask how I am and I say I’m fine, I’m probably lying. But don’t push it because if I really want you to know I will tell you.

Just because you know someone else with the same diagnosis as me doesn’t mean that I’m capable of the same things. Your friend with anxiety and depression can go to social gatherings; I struggle to.

No, cyclothymia isn’t “pretend bipolar”.

Most people with a mental illness look and act just like everyone else.

Anti-depressants aren’t a bad thing. They can be life-savers, literally. They’re not a magic cure though and it can take time to find the right ones.

The same is true for any kind of psychiatric drug.

Also exercise. Although it can be helpful to some people, it can be detrimental or just unhelpful to others.

People with a mental illness are far more likely to be the victims of crime than the perpetrators.

It can be frightening, fighting for control of your own mind every day.

If I drop off the radar for a while, it’s almost certainly because I’m having a hard time and nothing to do with you.

The same is true if I cancel plans to meet at the last minute.

Some people recover from mental illness. For many it’s a lifelong condition.

Not recovering from a mental illness doesn’t mean you’re not fighting it hard enough, or that you’re wallowing in it. It doesn’t mean that you’re weak either.

Feeling suicidal isn’t weak or selfish. Killing yourself isn’t weak or selfish.

Self-harming, in whatever form it takes, isn’t weak or selfish. It’s a coping mechanism when nothing else can help.

Talking about mental illness and sharing experiences can be really interesting.

If you’re sympathetic to someone with a physical illness, you should be sympathetic to someone with a mental illness. It’s just as painful, often more so.

Some days just getting out of bed or leaving the house is a struggle. That’s not the same as being lazy.

Mental health services are having their funding cut across the board. It’s never been easy to access help, in some cases it’s now nearly impossible.

If you don’t understand something, it’s better to ask than to make assumptions.

I could write many more of these but I won’t – please feel free to add your own though, and please do look at #ChangingMinds. I’d like to leave you with this:

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(From/by Boggle the Owl).

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