My Cyclical Life before Diagnosis with Bipolar

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As an adult before my diagnosis, my life was cyclical, but I never understood why. My entire life was ruled by my moods, as they jutted and churned, spiking incredibly high and terrifyingly low. Every two to three months, I became horribly ill and then I would have to take time off work. Before the illness would kick in it would be preceded by a bout of elevated mood. I wouldn’t have stopped for weeks. I would feel utterly exhausted and just want to sleep all the time. Sometimes I would catch a virus; I was and still am particularly susceptible to inner ear infections, that are often linked to stress and fatigue. Then of course there were the multiple bouts of depression. I’ve lost count of the amount of times I’ve had to say no to seeing friends, or been signed off work for weeks or months.

The doctors, and I say doctors as I saw so many different ones, had no idea what was wrong with me. They would spout the same nonsense I’d already been told.

“You’re suffering from stress.” Nope. I would try and cut out and eradicate the source of the stressor in my life, but the physical ailments would keep coming back.

“Try to look after yourself and plan a nightly routine before you go to bed.” Didn’t work and has never worked. I could be sleeping a solid eight hours or more and still feel as dreadful the next morning and the morning after that. I would also have random sparks of high energy and a complete lack of need for sleep.

“Drink some camomile tea.” Laughably bad advice, if I hadn’t been so bloody tired and ill all the time. I don’t understand where this notion came from made by health professionals that a cup of herbal tea is a cure all. Maybe if my depression was mild to moderate a cup of tea and a chat would’ve helped, or could have calmed some mild anxieties, but I was suffering. Having severe depression means needing real, tangible routines and support in place.

“I’ll order some blood tests for you.” The first time this was suggested my reaction was a positive one. I felt that to be so utterly exhausted so frequently for a woman in her twenties was far from normal. I was convinced it must be some form of physical ailment. Then came the results,

“You might be anaemic” Nope.

“You might have an underachieve thyroid.” Nope.

“Maybe you’re diabetic.”Nope.

“There might be a problem with your liver and kidneys.” Nope. It got to the point where I believed I had chronic fatigue, but it didn’t account for all the times I had huge bursts of energy for months on end and could lead a normal, active life. I also didn’t suffer from the same muscular and joint pain that is associated with the illness. Then there were the times when a GP would say,

“You’re depressed.” Yes! This is the point where I thought the doctors were right and they were, in a way. I was showing all the symptoms of depression. I would be given a prescription of antidepressants. I’d start to take them and begin to feel unstoppably hyperactive. I’d throw out the remainder of the prescription. I would believe I was cured and ignored the fact that the general consensus is that you usually feel worse before you feel better when you begin taking and antidepressant. What I didn’t realise back then, was the medication was only triggering the illness further. The drugs were causing me to feel manic and so the cycle for me continued, as my moods bustled for dominance. I’d feel fantastic for a time, then I’d crash. I might then be prescribed Prozac, for example, that would in turn make me feel superhuman. Then I’d feel gut wrenchingly awful. Then there’s the time I don’t take medication, but my energy eventually explodes and my mood elevates and then…it’s laughable that not a single medical professional made a connection. That really upsets, in fact it angers me incredibly. Could not one of them have taken the time to look through my notes and ask me why i stopped taking antidepressants after two weeks, or so suddenly. I would have answered them honestly. This would have led to more questions about my state of mind and my mood swings.

It wasn’t a doctor that asked me about my mood swings; it was my Mum. I remember we sat down together when I was signed off work and very unwell. At the time she worked with young children who had problems with anger and mental health and asked me, straight out,

“Do you ever mention your mood swings to your doctor?” I had never thought speaking to a GP about anything other than my depressive thoughts and tiredness. Why would I mention that? To me at the time, it was just part of my flawed personality. I took my Mum’s advice and mentioned it to my doctor. It was a GP I had never met before, at a surgery I had just signed up for. As soon as I mentioned I also had periods where I was as I called it ‘hyper’ and reckless and quick to anger, he referred me for a psychiatric assessment.

I was diagnosed with Bipolar Affective Disorder at the assessment. I wish I had known what to say ten years earlier.

I am not Defined by Mental Illness

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Mental illness plays a major part in my life. I talk about it often. I do this because I’m desperate to raise awareness and for funding to be increased for mental health services. Both of these issues drag behind those for physical health. It’s unfair and discriminatory, so I feel it’s my duty to speak out on behalf of those whom are unable to. This doesn’t mean I’m defined by the illness I suffer from. I admit, there isn’t a day that goes by where I don’t think about it; I have to, in order to stay stable and healthy.

I am so much more than my mental illness; I’m a geek, with a passion for video games, science fiction and anime. Currently I’m writing a novel and I love to create, whether it’s sculpting, sketching or painting. I’m a vegan and every time I see a picture of a polar bear I cry. (I can’t help it!) I believe in a fairer society for all and voted Labour in the general election. I taught myself Mongolian throat singing.

When a friend or family member speaks out about a mental illness they are suffering from, they need to be treated as they were before they said anything. Their illness isn’t the only topic of conversation you can speak to them about from now on. They are a person with an identity, personality, hopes and dreams, hobbies and passions. They are not just ‘the poorly one’ or ‘the awkward one.’ or even ‘the weird one.’ or the one you stopped speaking to because you didn’t know what to say or how to deal.

I know it can be difficult for family and friends to acclimatise to the idea of a loved one with a mental illness. It takes time for everyone to adjust, not just the person with the illness. Here are a few ideas that have helped me and my loved ones:

Talk to one another: If you don’t understand the condition ask, don’t stay silent. It can feel like it’s never the right time to talk but it’s important to make time to do this. It doesn’t have to be serious or sombre. It’s more than likely the other person has been waiting to talk to you or ask you questions. Be the first to strike up a conversation. I have found my relationships have been able to move forward to a more positive place after talking.

Invite them to appointments: After talking to a family member, and you can see they’re still struggling to understand, invite them to your GP or Psychiatrist appointments. When I see my psychiatrist, I will have part of the session one on one. I invite my partner or family member in before the end of the appointment. It gives them a chance to hear about how I’m doing, and to ask any questions about my condition. My psychiatrist always asks me if there is anything I wish to keep private between us before bringing family into the room.

Find a support group: Most support groups welcome carers and supporters. These have been vital for me when I needed to connect with other people with Bipolar. The group I attend splits the session into two parts. The first, focuses on an aspect of Bipolar already picked by the group, or invites in a guest speaker. The second part is an open forum, to ask questions and share experiences with the group. For family that have attended, it has given them a real insight into the disorder.

Learning and educating yourself about a condition can be freeing. You realise it can be managed and that it doesn’t need to consume your life. You are more than your mental illness. When you invite others to share your knowledge it gives them an opportunity to see past the illness and see the real person behind it.

Am I ‘faking it?’ Thoughts on having an invisible illness

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I look perfectly well.

I can get out of bed. I shower, I wear clean clothes. I apply make up. I smile and chat and laugh.

But I’m not ok, I’m far from it. This picture was taken when I was severely depressed in March of this year. My medication had been lowered and it wasn’t working as it used to. I was left feeling like I was on the edge of a precipice, and I was barely clinging on. At the time of writing, my medication has been reviewed and increased, and I’m feeling more stable, more like myself. But I still look the same. I look as healthy as I did when I was struggling. Having Bipolar, or any mental health problem, means understanding what it’s like to have an invisible illness.

I have good days, good weeks, and if I’m lucky good months. These are the times I can get on with life. I can go out and enjoy living without the ogre of Bipolar looming large. Although, there is a voice. A voice that at first irritates and then consumes my thoughts,

“There’s nothing wrong with you. You’re faking it.”

It tells me I’m just lazy, or attention seeking. That I’m making all of this up. Even when I’m depressed, or in the midst of a psychotic episode or panic attack, the voice is there. Sometimes I believe it. It’s a dangerous voice, because on more than one occasion I’ve stopped taking my medication when I believed what it was telling me. That has never ended well. Missing Medication: Withdrawal and Side Effects

I know I’m not the only one that lives with this voice and the fear that they’re faking. For me, it comes from years of misdiagnosis, and the worry that maybe this diagnosis is wrong too, and actually, really, there was never anything wrong. Even after nearly five years of being diagnosed with Bipolar I still compare myself to others with the condition and convince myself I’m fine. Deep down though, I know Bipolar is a complex disorder, and everyone has a different experience of it.

It comes from people misunderstanding mental illness, believing sensationalist ideas, or making sweeping comments such as,

“I don’t believe in mental illness.” or,

“Medication and psychiatry is all a lie.”

To be told that everything you know is happening in your mind, that you feel so intensely is fake, a lie is suffocating. It’s wrong of these people to make such judgements. It’s strange to me that although mental illness touches 1 in 4 people in their lifetime, it is still so widely misunderstood and underrepresented in society. That leads back to the beginning of my post. Because it’s invisible, mental illness is difficult for people to relate to or understand. People often want to find an explanation for behaviour and because they can’t see mental illness as a cast or bandage on someone’s body, or on an x-ray, they look for other ways of defining what it means. As humans we want answers. We want to fix what is broken. There aren’t always answers for where mental illness comes from. There aren’t any quick fixes, and for some it’s a life time of mending over and over again what’s broken.

I know that seeing a psychiatrist and taking medication has saved my life. I know that I wouldn’t be here without the intervention of medication. No amount of exercise, calming baths and cups of tea would’ve had the same effect. I have to remind myself of this fact on a daily basis. I know I need to educate and inform friends, family and strangers about Bipolar and mental illness in general. The more people I talk to, the quieter that voice becomes.

‘I thought the voices were normal.’ Realising I had Psychosis

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I suffer from Bipolar disorder, well known for it’s symptoms of mania and
depression, but what many people don’t realise is that some sufferers also
experience psychosis. These could include delusions, auditory and visual
hallucinations. For me, I hear voices. This happens during periods of extreme
moods, so when I’m manic or severely depressed. I may hear voices that are
comforting or spur on my mania. Sometimes the voices are just a jumble. When
I’m depressed, it becomes disturbing. Voices will scream and shout at me,
or sneer vindictive threats. I write about one such experience here: Doubting Myself – Hearing Voices

When I was younger I thought having someone talk to me in my head was normal.
Then, as I grew older, I believe I was in denial. Something like this
couldn’t happen to me, it just didn’t seem fair. It wasn’t until I
stumbled upon an article that explained the symptoms that I began to truly
except this wasn’t right. I sat reading, with tears welling up as the
realisation dawned on me; I had been experiencing psychosis. I cried for a
long time. The idea of telling anyone I had psychosis terrified me. What if
they were afraid of me? What if they thought I was dangerous? My fear of
being labelled as ‘mad’ or ‘insane’ stopped me from being honest with
the people closest to me. I didn’t want to lose friends or have family
treat me any differently.

Even as a sufferer my view of psychosis had been skewed by pop culture
representations. You were a disturbed, dangerous individual that didn’t fit
into society if you heard voices. It couldn’t be further from the truth in
my case. I was just an ordinary woman; I was in a long term relationship, I
worked, I went out with friends. Yet I felt stigmatised before I even reached
out to anybody. I stayed silent for years, only telling my psychiatrist after
a year of treatment for Bipolar.

I eventually opened up to my partner. It was an awkward conversation, with
many pauses and silences as I struggled to explain myself. Although he
initially found it difficult to understand, he was supportive and caring. He
could see how upset I was becoming and how much of an internal ordeal I had
been through keeping this bottled up inside, and knew all I needed from him
was a hug. Later, I told my family and they excepted it with an ease I
wasn’t expecting. I have begun to be open about my experiences on social
media and the outpouring of support from friends has been incredible. I am
truly lucky to have such open minded family and friends.

I know there are people out there who don’t understand and some that are
scared of psychosis. If these people opened themselves up and had a genuine
discussion with someone like me they wouldn’t be afraid. I have met people
who believe it is edgy or cool, or use it as fashion statement. It is none of
those things and is not something you should ever wish on yourself. It is
debilitating, bewildering and terribly frightening, but with support can be
tackled.

Conversations and Experiences of Stigma Against Mental Illness

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I’ve had many conversations about mental illness and Bipolar. I am very open and honest about my illness, and have refused to hide it. I want to show people that even though I have a mental illness, it does not make me weak. On the contrary, I believe to be able to keep fighting this disorder I am stronger than I ever would have been without it. People like to think mental illness doesn’t define them but sometimes it can. It has moulded me into a fighter, and I won’t ever stop.

There have been times where I faced stigma because of my illness. Below are just a few instances;

A few years ago now I worked for the local council. I thoroughly enjoyed my job as a Family Worker but was suffering with depression and trying to keep it at bay. Unfortunately it meant I had to take time out, to look after myself. A certain colleague would make snide remarks about my time off, saying,

“At least I’m actually here all the time, not like some people.” or “Some people are just not able to cope with stress as well as others.” They would look at me directly as they made these comments, a smirk across their face. It made me feel like I was a failure at my job, a job which I took great pride in. I hadn’t been diagnosed with Bipolar at that time, and felt like I was always having to make excuses or justify why I was depressed.

Later, I applied for a job at an NHS day nursery. the interview went well and I was offered the job the same day, subject to references. I was ecstatic and went out and celebrated that evening with my boyfriend. A few days later I received a phone call from the manager of the nursery. The first thing she said was in an abrupt, unsettling tone,

“Why didn’t you tell me?” Naturally I was confused and taken aback so I asked her what she meant. “Your sickness record is very poor, you should have explained this at interview.” I knew there was nothing I could say, and my heart sank. I didn’t get the job. At the time I had still didn’t have a diagnosis, so felt I couldn’t pursue them for being discriminatory.

When I’m feeling high and a bit manic, I will talk to anyone and everyone. I started talking to this lad at a nightclub, he was quite young and seemed nice enough. He started telling me about himself and how he was an awful person. Me being kind and sympathetic said,

“No, no don’t beat yourself up, you don’t seem that bad to me.” He then asked,

“So tell me about yourself.”

“What do you want to know?” I replied.

“Well, what do you do?”

“I’m unemployed.” I said reluctantly.

“Why aren’t you working then?” he asked.

“Because I’m not well.” I said simply. Then he asked what the matter was. This was the point where I paused. Did I want to be honest? I had only recently been diagnosed. I thought why not, I have nothing to hide and nothing to be ashamed of. I suppose I felt guilty being out at a nightclub when I was ill and that some people may not understand how I can manage to do that. I decided to be honest, expecting more questions. “I have Bipolar.”

“Oh” he said, sounding disappointed. This was when the mood changed and I was subjected to a tirade of negative opinion about the illness. “I had this girlfriend with Bipolar. I had to leave her, she was a fucking nightmare. I couldn’t handle it, she made my life hell. You lot are all a nightmare.” Then he asked if I had a boyfriend. I replied I had and he started again. “Fucking hell, how does he manage living with you?! You know you’re lucky to have a boyfriend if you’ve got Bipolar.” I was seething. How dare he judge me when he had just met me, all because I had a mental illness! I looked at him and calmly said before walking away,

“Well, I feel very sorry for any woman who has to deal with you. You’ll be very lucky to find another girlfriend with an attitude like that.”

Near the end of last year I had to take time off work because I was struggling with a deep depression. When I returned the manager was acting very strangely. He hardly spoke to me and didn’t ask me how I was feeling or welcomed me back. I had a conversation with another member of staff who I found out also had Bipolar. It felt good to know I wasn’t alone at work. However, I was given a word of warning.

“Just be careful, I was nearly sacked because of my Bipolar.” I was shocked and concerned.

“What! Why?”

“The manager doesn’t get it. I was told to cheer up because I was bringing the rest of the team down. We had a massive argument and he nearly fired me.” I instantly felt worried that I would have to paint a mask on at work every time I felt unwell. I then understood the managers reaction when I returned to work. I knew that Bipolar was not seen as a legitimate illness and I was deemed a nuisance for suffering from it.

The stigma I have suffered has been upsetting, but I try not to dwell on it. These are people who are ignorant and need to be educated. I am lucky enough to have a wonderful husband, family and friends that support me, and will ask me how I’m doing and who really want a genuine answer. Not everyone has that and I can’t imagine how difficult it would be not to have that support net.

Mental Health Representation in Popular Culture

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Does geek culture and media challenge the stigma of mental illness? Or does it perpetuate the myths prevalent throughout society? Many characters in the media are their mental illness. In many ways it defines them and moulds their personality and motivations. Many real sufferers struggle against this. I for one, never say ‘I am Bipolar.’ but instead, ‘I have Bipolar.’ People don’t go around saying, ‘I am flu’ or ‘I am a broken leg.’ (saying ‘I am the danger’ or ‘I am the light in the darkness, I am truth’ is however, awesome). I personally don’t believe your identity should be completely entwined with a mental illness.

Poor mental health is often used as a plot device; as a motivation for good or bad. Illness creates ‘evil’ ‘murderous’ villains and words often used include ‘crazy’ ‘insane’ ‘disturbed.’ Although shaping an important part of a storyline, the specifics of the mental illness are rarely, if ever discussed. We as the audience make our own diagnoses. That, along with mainstream facets of the media, perpetuate various myths that have created stigma, fear and ludicrous notions of the mentally ill.

Myths often perpetuated:

Mentally ill people are violent. Schizophrenia is most commonly linked with violence, but Multiple Personality Disorder and Bipolar are other common examples. These people are constantly teetering between sanity and insanity, the latter urging them and inevitably leading to torture, rape and committing murderous acts. The reality is people with mental health problems are a vulnerable group in society and are far more likely to be victims of violent crimes than commit them. The glaringly obvious example here is Batman and its’ multitude of lunatic, asylum dwelling villains.

Mental illness makes people mysterious and sexy. It creates an edge to a character that makes them appear exotic. The character is an ‘outsider who is not constrained by the norms of society.’ Rather then fully developing a well-rounded, believable personality. It is a lazy, cliched and poorly thought out rush job to make a two-dimensional character more interesting. Case in point; the hysterical, traumatised woman. Who is a badass and oh, is also incredibly sexy. The film Sucker Punch is a fine example of how to insult women and the mentally ill. Go and watch it…actually no, don’t bother.

The mentally ill are at all times sombre and brooding and that means the comics, video games and films have to continue this theme, from the music, to the cinematography and the colour palette. Shockingly, people suffering from a mental illness can be easy-going and wait for it…own an actual sense of humour! Hyperbole and a Half is an excellent example of how a comic strip can use humour to openly and honestly explain the realities of mental illness. ‘Adventures in Depression’ and ‘Depression Part Two’ are wonderfully entertaining reads but at the same time expose how daily, monotonous routines can become unbearable.

Obviously I understand the mundane realities of daily life can’t always create entertaining fiction. A screenwriters job is to create larger than life stories that drive ticket sales. A comic series wants to maintain and increase its readership. They are not going to change the hot girl with superpowers to the girl with superpowers who can’t be bothered to shower, comb her hair and wears pyjamas for weeks on end. The relentless hero who triumphs against all adversity, to the hero who has trouble getting out of bed every morning and feels sedated and nauseous due to their medication. A villain who creates fear and mayhem to a a villain who lives in constant fear their entire family will be killed if they don’t complete a daily ritual. When playing a video game you sometimes have to accept that although the playable character can survive an apocalyptic amount of shit in the first game go the series, that the second isn’t going to be about them overcoming PTSD. Sometimes you have ‘flashbacks’ or ‘hallucinations’ in cut scenes, but I don’t think many gamers would particularly enjoy playable hours of counselling and psychiatric sessions.

It’s interesting when you notice how many people are accepting or apathetic of the portrayal of the mentally ill when most of us will experience a phase of mental-ill health at least once in our lives. I’m not asking for much; only that producers and creators sit back from time to time and think about what they want to say with their work. Do they really need to demonise a vulnerable group in society? A little sensitivity to the plight of so many is really not asking for much .

Charged for being ill; Long term mental illness and paying for prescriptions

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I have Bipolar, a life long mental illness. I take medication to help me have some form of stability. Without it, I can become manic and a danger to myself, or severely depressed and suicidal. I need medication to function, to get up in the morning, to survive. Yet, I have to pay for my prescriptions. If I had diabetes, thyroid problems, or epilepsy, all life long conditions, I would not have to pay for my prescriptions. This is surely an example of mental health stigma.

Currently, individual prescriptions are £8.80. I have monthly prescriptions, of three individual medications, which cost me £26.40. Recently I have had fortnightly prescriptions, which would cost £52.80 per month, which is £633.60. per year. If I had to have that prescription for forty years, fortnightly at today’s prices, it would cost me £25,344. Fortnightly prescriptions are not unusual for people with mental illness, so this isn’t a huge exaggeration of the cost. That’s the deposit for a three bedroom house, and more money than I have ever earned in a single year.

With the Prepayment Prescription Certificate (PPC), it is £104 per year and you pay £10.40 of 10 monthly instalments. Over forty years that is £4,160. I have never been told about this saving by any medical professional. I simply happened to glance at a leaflet at the pharmacy. The fact is they don’t want to promote this. As someone who is not always able to work full time, because of mental illness, you can imagine that not having PPC medication would be unaffordable. If I didn’t have my husband, whom I rely on for financial support, I wouldn’t be able to afford to pay for my medication without PPC. Before I realised I was entitled, I had been taking medication for Bipolar for over three years.

There are still people in our society that would say to me “just get over it!” or “you can recover” or “you don’t need to take medication, learn to meditate!” What these people don’t seem to realise, or are unable to grasp, is that I have tried. I’ve tried to get over it. I’ve tried to recover. I’ve tried to not take medication. These are not solutions. They do not work. In fact, that warped way of thinking only exacerbates my condition. Without medication, to put it bluntly, I would be dead. Medication helps me to survive, but the right mix of meds helps me to thrive, and live life the way I have only dreamt of.

How the label of Bipolar changed my life – for the better

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At 10am, 13th December 2012 was a life changing moment; I was diagnosed with Bipolar. My initial response was of anger, an anger that it had taken until I was twenty seven and fifteen years of pain and suffering to finally have a diagnosis. So many years of my life felt wasted, as I had dragged myself through horrific bouts of depression. I had self destructed countless times as my manic episodes had caused my behaviour to spiral out of control. I was broke, in debt and unemployed. I wanted to scream and yell at all the doctors that had misdiagnosed me over the years. I felt someone had to be held accountable for everything I had missed out on in my teens and for most of my twenties. There was no one though that I could single out and blame, it was the way it went for many people with Bipolar. I had to let it go. For my own piece of mind, my health, I had to let it go.

When the anger had subsided, I realised how this label I had been given explained my erratic behaviour. It gave meaning to my partner, family and friends of my sometimes bizarre actions. Instead of recoiling from this label, they were willing to listen and wanted to understand more about the disorder. I feared that such a diagnosis would scare my family and friends. It didn’t. This reaction filled me with the confidence to be able to tell more and more people about my diagnosis. When asked why I was not working, or why I was ill, I was always truthful.

Being labelled was a release. No longer did I feel weighed down with the burden of knowing that something was wrong with me, but not understanding what it was. I could prove that I wasn’t attention seeking when I was suicidal, or that I would magically just get over what I was feeling. I was armed with knowledge and I could now educate myself and learn how to combat and find some relief from this illness.

I’m not denying there is stigma attached to having a mental illness, of course there is. I’ve encountered it many times. What I’m saying is that I felt I was able to wrestle some control back into my life. With the help of a psychiatrist, I was able to assess my capabilities. I could set realistic targets to have a sense of normalcy and stability I hadn’t felt in years. I felt empowered and that I could choose how to manage my illness with medication.

I’ve heard many different opinions about being diagnosed and how it has changed people’s lives. Many people don’t like the idea of having a label that comes with a mental health diagnosis. That it singles you out and makes you different, and for some, can make it harder to find support and care. This new label attached to me had given me clarity. I could look back at the years before and how not knowing what was wrong had decimated my life. Laid bare were the countless acts of self destructive behaviour, the violent outbursts, the almost insurmountable debt I found myself in. How my drastic moods had clouded my experiences and often left me feeling like a shell of a human being. For me, the day I was diagnosed and ‘labelled’ as Bipolar drastically altered my life but in a way I hadn’t expected. To anyone who is concerned they may have Bipolar, or any kind of severe mental illness, please don’t be scared of finding help. Don’t be scared of a label; it saved my life.