Infertility = Vulnerability

It is insulting that, of all the cost-savings Primary Care Trusts could make, a few are trying to claw back their own financial mis-management by discriminating against infertile couples, promoting health inequalities through cutting the provision of NHS-funded IVF treatments. If preventing people from receiving the treatment they need to reproduce is the answer, surely it is more cost-effective to mandate birth control, heck, even hire cops to enforce abstinence, for the general public? Perhaps only let the healthiest, most intelligent, most successful people breed, to avoid poor lifestyle decisions and faulty genes. Bring eugenics back.

Bury, Warrington, and North Yorkshire are just a few PCTs who have cut NHS funding for IVF, and there will no doubt be more. It may have been a hard decision and it may only be temporary, but it is without a doubt the biggest mistake they could make in an already fragile NHS. Let me explain.

When I first trained in emergency first aid, I learned my ABCs. Airway, breathing, circulation. Make sure you can breathe. Make sure your heart is beating. Then take care of the rest.

When I trained in wilderness survival, I learned the priority of other needs: water, food, shelter, and sleep.

When I volunteered as a youth mentor, I learned how important personal safety, belongingness, intimacy, and self-esteem were to our well-being.

When I earned my university degree in human and evolutionary biology, I studied how all of these human needs revolved around one thing even bigger than us: reproduction. Without reproduction, no other priorities matter. There would be no more human race. There would be no life, period. This world is a celebration of our ability to persist. Improve, diversify and persist.

Those PCTs must have forgotten their basic biology, because I can't think of a single reason why anyone could help an ex-smoker breathe but not let an infertile couple have at least one chance of having a child. Sure, the world is over-populated. But I dare you to tell the soldier who just lost his legs that he shouldn't receive prosthetics because, don't worry -- everyone else can walk just fine. The human race will carry on.

Good for the soldier if he has the money to afford his own prosthetic legs or specialised wheelchair. Most don't. But why should the soldier go without legs so that I can receive therapy for my mental health problems? Who decided that my asthma medication mattered more?

Those PCTs have in effect told infertile couples who cannot afford IVF to go without having children just so PCTs can balance their accounts. We finally have the price for a human life, and it must be less than £5000 -- the current cost for IVF.

I no longer wonder why the mental health services in Northwest England are so over-subscribed, when their primary care trusts come out with decisions like this.  I hope they can put all of the money they save in 2012 into increasing the number of therapists, because it is going to take a lot more than 6-12 months to band-aid this sort of loss. And I don't just mean loss of children. I mean loss of respect and trust.

Many people disagree with me.

And in part, they are right. I could live without children. I could sell everything I had to fund my own treatment. And if the NHS didn't exist, that's precisely what I would do. But that's not the country we live in. That's not the healthcare system I work so hard for, every day.

Today, my husband and I lost another embryo. Can I call it a child? Is it the same as losing your teenaged son or your elderly mother?  Your sister, your lover, or your friend? We'll keep trying, because that's all we can do. You might feel a small amount of empathy for my loss, but I want to be completely clear: this month isn't any less hard than those months where our child ended even before conception. It is the same loss.

Grief isn't meant to precede joy. That's not the natural order of things.

And if infertility didn't go hand in hand with such stigma and shame, I'm sure more you would understand how it feels to be placed in the same category as hair implant surgery. Because more of us would speak up. But as for today, I can't even tell my family. Only our GP knows, and even our GP doesn't have time to care.

As the PCTs have been making so imminently clear recently. They are too busy with More Important Problems.

Read on the NHS Choices blog.

Having a Personality [disorder]

In between referrals, life goes on. I’ve lost 10 pounds just by eating less and exercising more (it really is that simple for most people). My asthma has returned following severe exposure to an obscure allergen. My partner and I experienced our first positive pregnancy test after years of infertility… and subsequently miscarried days later. I started a new project at work. And next month, I meet my next therapist.

Having a Personality (Disorder)

Inherent in personality disorders is the idea that something is broken. Something is causing pain or discomfort. And by virtue of this pain/discomfort, something needs to be changed.

It follows then, that there are many different sorts of personalities, none of which cause pain and discomfort. One person can even have multiple personalities. There are so many different ways to be human; some seem absolutely bizarre and impossible, but it’s important to accept that these differences are not inherently wrong and do not necessarily need ‘fixing.’

The first and biggest hurdle of a personality disorder is acknowledging something about you is different. Following that acknowledgment is validation from others… whether in the form of meeting people with similar personalities and experiences or in the form of a therapist diagnosing and reassuring you. This isn’t an easy process. For one, culture demands similarity, familiarity, and intimacy. The more you deviate, the less likely people will accept you. The less they accept you, the less likely they will be to validate your different perceptions and behaviours. You will probably even stigmatize yourself.

If you aren’t able to accept your own differences, you will either be fighting them or denying them. Either way, in the best case scenario, you will be wasting a lot of energy just ‘getting by’. In a worst case scenario, you resort to drugs, self-harm, abuse, smoking, eating disorders, alcohol and so on. So, the second hurdle is self-acceptance, even if it means accepting that you are utterly unhappy about the sort of person you are and completely doubtful about your ability (or desire) to change. Change only follows acknowledgment and acceptance.

It may be this is all you need to cope. Someone with dissociative identity disorder does not need to integrate all of their parts. Someone with schizoid personality disorder doesn’t need to be more sociable. What anyone with a personality disorder really needs are the resources and skills to cope with who they are, so that they become just a personality (minus the disorder).

Everyone changes, grows, develops… that’s life. The only difference a personality disorder makes is that there are more hurdles between you-today and the you-tomorrow.

Being Schizoid

I have no friends, and despite being deeply lonely, I struggle to want friends in practice. I can’t even tolerate having family on the best days, and I barely sustain enough intimacy with my partner to conceive a child.

There are few opportunities for me to have a relationship which is safe… that grows at a pace and a distance I find comfortable.  The real world gives parking spaces for disabled, but you won’t find any equipment to service my handicap. I cannot sustain a friendship. My psychological soil is inhabitable.

The more judgmental readers might be secretly happy that my partner and I cannot reproduce… except, in reality that’s the third hammer to strike. I’m not a daughter. I’m not a friend. I won’t be a mother. With all of this emptiness, I’m not sure how much longer I can manage to be a wife.

So, if all I am …is an employee… what happens when I retire? What if I ever lose my job? What if I become unable to work?

Desperate for meaning doesn’t cut it. I can see why I’m such a high risk for suicide despite my lack of suicidal thoughts. There is a real danger that one day I will have no attachments left at all. No reason for today or tomorrow. No sign to anyone that anything is wrong.

I don’t want to change my personality. I just want to experience the ups and downs of being a wife, a mother, a friend, and a daughter, rather than the perpetual grief and shame hanging over me in every quiet moment.

Read on the NHS Choices blog.

Time to [redefine] Change

One in four people suffer from mental health problems at some point in their lives, a statistic which has been passed around and quoted so often, we’ve become desensitized to it. It’s supposed to challenge our culture (desire? habit?) of excluding people who experience mental illness by acknowledging the prevalence of it. But the problem (as usual) is a bit more complex. The Department of Health suggests that people can manage their mental health problems successfully, but “the biggest barrier to getting back on their feet is not the symptoms of illness, but the attitudes of other people.”

Time to Change’s recent social experiment (despite its design flaws) has elegantly shown that most people would prefer to date someone unattractive and uninteresting than someone with mental illness. Can I really blame them? I’m not sure I would answer any differently, and I’m certainly not obliged by Equality and Diversity laws when I choose who to spend time with and who to marry.

I chose my husband specifically because he was so stable and kind, and because I believed we would have genetically and socially superior children (Superior to me, that is). Would he have still chosen me had I opened the conversation with “I like Frou Frou and have a personality disorder” rather than simply getting to know each other slowly and sensitively as people? It’s a bit like stating on your first date that you are incontinent or have erectile dysfunction. Who is that helping, really – you or your date?

I defy anyone who feels the need to disclose that they suffer from mental illness to 'prepare' people. If we’re disclosing our personal foibles, what about disclosing our high cholesterol, our physical inactivity, our inability to take out the trash, or our secret belief that we are smarter than most people who will reply to our ad? Wouldn’t that be a fairer comparison than simply being Attractive, Interesting (+ BY THE WAY, Mentally Ill)?

It’s easy for me to toe the line. People with personality disorders are not even considered to be mentally ill by many experts. Ironically, without the power of excuse, all that leaves us PD folk with is stigma and exclusion. Under the new changing times, I am empowered to share that I suffer from depression and anxiety. I experience them from time to time, but I don’t suffer. So what am I left to say that anyone else is prepared to hear? Because personality disorder is not mental illness anymore. It’s me. Just Eliza. Attractive, interesting (+ BY THE WAY, Different).

This is not self-deprecation. A personality disorder is, by definition, undesirable. But I embrace the term. I am okay with being undesirable, moreso while the discomfort helps you realise the massive impact small choices can collectively have on a human life. We all affect each other, whether we are 'one in four' or 'three in four.'

I may be an unavoidably different adult with a spectacularly higher risk of both mental and physical illness (including suicide!), thanks to a gauntlet of attachment problems and series of unfortunate events. And I understand that 74% of you wouldn’t want to date me or be my flatmate. But you would be a fool to not appreciate the unique and powerful perspectives and contributions that people with mental illnesses and personality disorders have.

Let me redefine 'one in four' for you.

If your finger is bleeding, you wash it, bandage it, and more importantly – use a knife more skillfully and more safely in the future.

25% of our nation is bleeding, which means 100% of us need to care. And 100% of us need to change.


Read on the NHS Choices blog.

Fourth day of CBT

My therapist had a long talk with his supervisor about me. He revealed it suddenly, as though he wanted to say something else but couldn’t, and just as suddenly tried to explain himself, in anticipation of my own anxiety about breaches of confidentiality. But I’m not an ordinary service user. I know mental health workers discuss cases with supervisors and, where appropriate, their teams. It gives me more confidence and faith in the system to know therapists are supported. His concern was misplaced.

I’m no longer participating in cognitive behavioural therapy. [Avoidant tendencies, check] This is more than how frustrated I felt on my third day. Maybe it has to do with my therapist’s “long talk.” He has noted several times during our meetings how anxious and upset I was talking to him as though it was unexpected of me to be anxious and upset talking to a complete stranger whose sole role is to judge, challenge, change, and support you. What did he want me to say? Correct; I struggle to trust strangers who smile at me on the street, muchless strangers who have the ability to section me.

I agreed to step up my care to a clinical psychologist who would be better suited to help me using alternative therapeutic models. So, in a way, I was right last week. I like to think that my therapist’s supervisor found my case so interesting that she wanted to meet me herself. [Narcissistic tendencies, check]

In truth, I felt both relieved and guilty.

When I offered to quit entirely, my therapist’s reaction was immediately and strongly NO. I wasn’t even testing him; I really do want to quit. I work in healthcare; I know how precious these resources are. Someone else needs him more. I’ve coped for years. I can cope for more. But, NO. Apparently, NO.

The Guilt: Why would the NHS want to help me?

I’m not a risk to others. I’m not a risk to myself. I obey the law. I don’t misuse substances. I am intelligent. I am independent. I am hopeful. I contribute meaningfully and financially to society through work, volunteering, and community events.

Flip the coin.

I have a personality disorder, and I don’t even have the decency to be a vulnerable child, an offender, or a woman who self-harms. I am Other. I am less than 1% of the general population. No NICE guidelines exist for how to help me.

Stick my smiling face up on a poster. It’s possible to have “an enduring pattern of inner experience and behavior that deviates markedly from the expectations of the culture of the individual who exhibits it” and still succeed. It’s possible to succeed and still be broken.

Or in my case, in exile.

JustEliza says she's 'spent most of my life trying to solve the puzzle that is me'

The Relief: I found me.

A step up the mental health ladder means that something must be really wrong with me. All my Stigma bells rang when my therapist suggested I see the clinical psychologist instead. I knew the sorts of people who needed clinical psychologists. I never imagined myself one of them. Not even when I agreed.

Later that day, I devoured commissioning guidelines and service frameworks and, finally, diagnostic criteria on personality disorders. One link, after another, and then: I found me.

Take that, Clinical Psychologist. I’m one step ahead of you. I’m weak in the knees, fuzzy in the head, and filled with a sparkling mix of intimacy and revulsion at this discovery (and doesn’t that pretty much confirm it all). I have my ICD-10 code. I have my “emotional anatomy.”

Now, the reconciliation can finally begin.


Read on the NHS Choices blog.

The Little Penguin

If you watched BBC recently, you might have seen an animated short titled "The Little Penguin" by World of Happy.  For just a short time, you can view it again on BBC Iplayer. I hope they leave it up for longer, but if you can't find it, try youtube. I hope Giles Andreae doesn't mind me sharing the story here, as it's a very short, beautiful (albeit highly optimistic) lesson on one of the principles of Cognitive Behavioural Therapy: challenging negative thoughts.

There was once a little penguin who was frightened of the water.

"This is no way for penguins to behave," said his father. 

"Be gentle," said his mother, "for all of us have fears that others may find hard to understand. Come little penguin, come into the water with me" 

"But what if it's cold," said the penguin, "What if it's dark and deep? What if there is a big fat scary monster? What if I can't swim?" 

"Ahh," said his mother. "But what if it is light and beautiful? What if all your brothers and sisters are there? What if there are fish for you to eat and friends for you to play with? Come little penguin, take my hand." 

And with great courage and great trust, the little penguin slipped into the water, and, for the first time in his life, he felt the joy and freedom, wonder and delight, that every penguin's heart is born to know.

Read on the NHS Choices blog.

Third day of CBT

In the dream, I am worrying. I look at product after product on the shelf, until I forget I am standing, or where I am standing, or who I am. I've become simply a vessel for image after image of Possibility in the form of Sugar. I worry, visually, and then I wake, because waking is easier than making a decision. Than acting on a belief. Than believing anything at all.

My homework now includes The Workbook -- a collection of checklists interspersed with definitions and stereotyping -- which treats me like I, too, am just a checklist of symptoms just waiting to be defined. Did the person who wrote this ever have anxiety? I'm not sure she did. She might have realised how horrible it feels to battle intellectually with a form over whether "generalised anxiety is a problem for you."

I'm going to skip straight to Section 2: my own Five Areas Assessment. My therapist has now explained this approach to me 4 times. That's one for each time we've met, plus one extra when he was feeling especially pedantic. Essentially, our thoughts, physical symptoms, feelings/emotions, and behaviour all are linked and affect one another. This is basic science for someone whose post-graduate education focused entirely on theories of mind and behaviour, let alone someone who has already been labelled gifted. I'm not looking forward to the fifth time he explains it to me. If I interrupt, will I earn a new label? Difficult? Disrespectful? Impatient?

Shoot, there's another checklist already. I'm putting The Workbook away before I hurt it with my condescension.

We talked in circles this week, because we've finally reached the edge of his understanding of the human mind. I didn't think it would come this early in the process, and to be honest, I'm considering giving CBT up because of it. I feel deliciously mean just writing that, because essentially I just put my therapist, another human being, down.

Did you catch that? I'm being defensive. At some point, I shut the gate, and he's left standing outside, alone.

Cognitive Behavioural Therapy is meant to be challenging. It's good to have help, but we should all be doing this ourselves in the first place. But it's not as easy as thinking "Hmm, I am underestimating my ability to cope with this new situation. I feel unsafe and confused about what is happening to me. I am anxious." I know I can cope. I can make all of my problems disappear, one way or another, with distance and time. I don't worry about me.

I worry about you.

I worry, because I see you. I interact with you and I know you. My mind races through your life, calculating, estimating, testing, evaluating, predicting.  Is mind-reading so very wrong then, if I am always right?

I avoid you.

I avoid, because I would rather be alone than have the opportunity to manipulate you. And I will manipulate you, even if it's simply to counsel you. Knowledge is power, and power is responsibility, and I simply don't want responsibility for you.

There comes a point in your life when you realise you will never have what you want most. Is that what I'm grieving? That I won't ever be able to make everything right in the world? That I can't heal everything? I'm past adolescent, past puberty. I've discovered what I am capable of. I'm past exploring. I've recoiled.

My therapist challenged me this week. I reached the edge of my own understanding of my mind. I didn't think it would come this early in the process, and to be honest, I considered giving CBT up because of it. But that would be avoiding, again. So I challenged myself. I went home, and I wrote this, like I'm writing now. We talked in circles because I cannot resist shutting the gate. Because it's easier to be talked to about self-esteem, shaky hands, and shallow breathing than admit what I'm truly afraid of:

Hurting you.

Read on the NHS Choices blog.

Second day of CBT

Things I stopped doing because they made me feel bad:

Hearing the news

Listening to non-classical music

Reading crime thrillers

Watching violent movies

Developing friendships

Eating processed foods

Sometimes, I test the waters again. I rob a bank on a popular console game. I hear about a brutal murder-rape in the local news. I start reading a famous crime thriller series. I meet a friend for coffee. I microwave some chicken tikka masala. And the music tells me sweet dreams are made of these, but I know better. I’ve been having nightmares all week.

I’m not perfect at avoiding. But, I am practiced.

This week we talked about my past, and I've been paying for it all day in flashbacks, shaking hands, and racing thoughts. It’s been nearly twenty years since all of my bad habits began, but the penultimate one is not sharing how I feel, what I’ve experienced, with others. Complex trauma. Avoidant personality. Attachment disorder. I’m sorry; it’s just that… everyone else here seems identify with labels: Pregnant. Asthmatic. Diabetic. Bipolar. Obese. I thought you might want a label for me. Like Sociophobic. No?

In counselling, I realized being gifted meant more than being smart: it meant being differently human. In cognitive behavioural therapy, I am changing how I cope with being differently human.  And the rest of the time, I am unpacking just how different I’ve become, now that the worst is over.

The elephant in the room.

I am happier without you. Should I be happier without you? I feel guilty for this. I feel guilty for being alone so long, loneliness became my familiar. I feel angry, because you never found me. You never even looked for me. I never asked for you, so you never asked for me. And now they’re asking. Now you’re asking.

I have no idea how to answer.

I’m not even sure I want to.

Read on the NHS Choices Blog.