Labels and language

Bipolar disorder is “just a label”.

Not to me.

I know mental illness is culturally and personally complicated. A faction, a rather large vocal faction, don’t believe in the existence of mental illness. There’s another debate about this over at Mental Nurse. I stayed out of it.

It’s fair enough to hold your own opinion but to me, it’s insulting when people refer to bipolar disorder as a label. The same is true of schizophrenia, some people refer to it as a label, but, more often than not, there’s a little get out clause stating that “oh, but schizophrenia, that’s an illness” because it is more obviously destructive and indiscriminating than bipolar disorder. “Learned” types don’t make this distinction but the laymen do.

One of the problems is that bipolar disorder is seen as a middle-class illness. Its famous sufferers are by and large educated, artistic people. Schizophrenia, on the other hand, is an illness that is known for affecting people from working class backgrounds. Its very image is of the mad bag lady, or the unwashed black man gibbering on the bus. This is a stereotype, not from me but from society as a whole. Schizophrenia is the poor man’s disorder, and manic depression is the rich man’s disorder. Because manic depression tends to be publicised as an artistic disease, it’s easy to see it as a label that auguments this image, rather than an illness like schizophrenia.

I can see why some people prefer to see mental illness as a label.

Mental illness, particularly schizophrenia and personality disorders, come with stigma attached to it. The public’s perception of schizophrenia isn’t a sympathetic one. It’s wrongly associated with violence, and people fear those affected by schizophrenia.

Because of the stigma attached to mental illness, it’s better to see it as just a psychiatric label with no real meaning to the individual. Being “a schizophrenic” or being “a manic depressive” says something about you, something that might be seen as negative. Labels you can get rid of. Labels are interchangeable and unreal. The causes of mental illness are unknown, so maybe it isn’t worthy of being called illness at all, and sometimes diagnosis can vary from person to person. There’s no way of proving that somebody has a mental illness. A label that says, “Something is wrong with you” is insulting and unnecessary. Lots of people believe that psychiatric labels are just imposed on someone because society doesn’t know how to cope with them. In my own experiences, some people have considered me to be arrogant because I explained that I had manic depression. Implying that I have a real problem, and am not just a contrary, melodramatic woman.

I see this as real. As real as any other illness.

I think seeing mental illness as being as real as physical illnesses is the way forward in reducing stigma. A lot of people don’t agree with me, though. If mental illness is real, then your diagnosis does mean something. And you can be defined by it. And people are defined by mental illness, far moreso than they are by physical illnesses, because a mental illness lives in your control tower, pulling the switches that make you who you are. But if mental illness is real, then it’s not the fault of the person who has it. They didn’t do anything to make this happen to them.

But if people just dismiss mental illness as a label, it devalues those problems. It implies that any suffering the person is experiencing is not real. It’s all part of a disposable label. If someone kills themselves over a label, well, that’s just stupid. Mental illness can be treated. (Although the actual wanting to be treated for it is another problem altogether). And, although there’s no real scientific evidence of yet that shows that mental illness is hardwired into the brain, there are a lot of physical illness that cause symptoms of mental illness. Dementia, epilepsy, MS. So there is something in the mind that causes hallucinations and mania. People suffering from hallucinations that have been triggered by a physical cause aren’t fashioning coping methods, so why are people with mental illness supposedly doing just that?

I don’t think that I’d be “free” if I thought of manic depression as a label rather than an illness. I don’t think I’d be liberated from all that manic depression implies. This feels like an illness to me. It feels like an infection. It swept through my body eleven years ago, it weighed down my bones and dissolved its sickness through my body and mind. This feels absolutely physical to me. I don’t just become depressed sometimes and manic at others. It’s not an isolated syndrome. It affects everything and it is not a case of “letting it”, no more than a person with cancer can “let” their cancer destroy their body. My energy is affected by it. My perceptions and my abilities are affected by it. Days I can’t sleep, and days I can’t wake, and days I can barely walk more than a few yards, and days when my hands shake so badly that I can’t hold a cigarette, and ash is confetti. It isn’t “all in my head” because it’s not confined to my mind. It’s in my body, too.

There is a theory that people develop mental illness to cope with unbearable stresses in life. There is one illness in which I support this theory: Dissociative Identity Disorder, because, overwhelmingly in those who suffer from it, there has been a massively traumatic event that has happened to them, and I can see and understand why someone would want “alters” in order to escape, in order to cope.

I don’t believe that other mental illnesses are caused by stresses in life. Certainly worsened by them, as any human emotion is affected by the life around them. In my case, I’ve had those traumatic events. A lot of my life was a nightmare. But, in a way, I deal with that well, just like I’m good at dealing with emergencies, I get on with it, and I always have. Nothing “triggered” my first episode, the same way that nothing has triggered all my episodes since. And I did not just “become” manic depressive when I was twelve. I can see its roots stretched back as far as my childhood, which makes me believe even more so that this is just an illness that I was born with.

If mental illness is real, then the people who suffer from it are not just burdens on society who got there on their own volition by being fucked up and reckless. It just happened to them, like cancer happens to other people. Because a lot of people with mental illness drink and do drugs to cope with it, well, the image of mental illness is unfavourable because we’re all alcoholics and druggies, on the bottom rung of society. They didn’t do anything for this to happen to them. It’s not their fault.

If mental illness is real, it can be treated. Maybe one day cured. If I saw this as a label, a label that was destroying my life, not because I let it (believe me, I try, very hard, every single day, to not let it do anything), I’d have no hope. I probably wouldn’t have accepted the diagnosis in the first, probably wouldn’t be treated for it, probably wouldn’t have a CPN, probably would never have spoken to Rob about it, probably never would have started this blog, probably would have killed myself the second I left hospital.

I don’t believe in the “Big Pharma”. All huge businesses are corrupt, and a lot of people shouldn’t be on psychiatric medications. But some people should, and for some people, it does help. Of course, because it’s a label, psychosis, mania, depression, it’s all good, it’s all someone “experiencing” stuff. But those experiences can be so destructive. And sometimes, people need a drug to pull them out of the depths and heights of these experiences. It’s not coercion (although I do agree with detractors that in the past, “inconvenient” people were put into hospitals), there is a need for antipsychotics and hospitals to help stop someone ruining their lives, or taking their lives. Of course people should be allowed to, but it’s unlikely that once you help someone ease back into a more rational frame of mind that they’d want to.

Another thing is that being “ill” grants you a “victim” status that those who espouse the label theory don’t like. I’ve written before about the survivor/victim mentality so I’ll just let you read that instead.

And there is, of course, the language of mental illness. Words that you are not supposed to use, lest you be a “victim”:

• Mental illness, as opposed to mental disorder/mental distress/fantastic thing that makes me so unique
• “Suffering”. You’re not allowed to “suffer” from mental illness because if you do, you’re a victim
• “Medication can be helpful”, no, medication is EVIL.

I understand the reason people refer to mental illness as a label. But it is insulting to me. And it’s insulting to me when people comment here and tell me to take a bit more exercise and eat my greens and do a bit of yoga and I’ll be fine, as if I did this to myself by sitting around, did this to myself by not eating enough leafy vegetables. Over eleven years, I have done all the good stuff, done the exercise, got my vitamins, had a “positive attitude” and it didn’t help. I did not do this to myself. If I did this to myself, I would undo it to myself. Oh, yeah, and if you want to be in my bad books forever, do come here and tell me three things:

1) Pull yourself together, I did, it’s just a label, think positively, your diagnosis doesn’t mean anything, etc etc

2) DIET and EXERCISE? Oh, and YOGA and REIKI and other bollocks? It worked FOR ME. You don’t need ANY OTHER TREATMENT AT ALL. In fact if the above doesn’t work for you, YOU’RE WEAK, AND BEING CONTROLLED BY THE BIG PHARMA!

3) Your illness is an EXCUSE for you not to live a NORMAL LIFE because obviously due to your EXCUSE you must not ever tell anyone that you LOVE them or PLAY WITH YOUR KITTENS or ANYTHING since you spend ALL DAY just being MANIC DEPRESSIVE.

4) How dare you use the words SUFFERING and MENTAL ILLNESS. It is “MENTAL DISTRESS” and saying that people SUFFER from it makes it sound BAD.

For those people, I can use other words, like “fuck” and “off”.

The only thing that my illness is an “excuse” for is for my slurring my words occasionally on medication. I’m not defined by my illness, even if I don’t consider it a label. It’s part of me. Part. It does hold the reigns on my life, but hey, whatcanyoudoaboutit. Not much more than I am doing, really. I think therapeutic exercises like yoga and whatsit are important as supplements to actual medical treatment (indeed, I am getting a prescription to exercise to help my energy), but not the be-all, end-all. I don’t like to be made to feel like a failure just because I’m in psychiatric treatment, and just because, so far, I’m not better yet.

It doesn’t mean that I define myself as “manic depressive”. I don’t. I think of myself as someone with manic depression.

I still don’t feel very well so that may account for the tone of this post, and the fact that it doesn’t make that much sense. Although at least I managed to get out of bed before 4pm today.

The Sane Guide to Living with Mental Illness

Wow, this blog has gone right off topic recently. Flippin‘ friends dying, they’re so inconvenient.

I am still nowhere near caught up on e-mails so please excuse me if you haven’t received a reply from me.

I am fairly sane at the moment.

This is somewhat of a revelation; I can’t remember a time in my life when I have been fairly sane. Oh, glimmers of sanity have squeaked through the black tarpaulin of madness but by and large, even my most coherent writings have come from a chaotic planet.

I am not incredibly depressed, nor am I manic. I’m not fantasizing about suicide- it’s been a few months since I’ve white-knuckled safety railings at the riverside.

Anxiety and paranoia, yes, excessive worrying- well, that’s just me- and my ongoing battle with weight and eating continues. A lot of sadness and sorrow and anger at recent events. But mood-wise? Steady, in a mildly depressed kind of way.

How do I judge my own sanity? By not comparing myself to other people. I’m never going to be Completely Sane. The lovely thing about the world is that you’d have to look a long way to find someone who is.

I’m never going to not have manic depression. Even now, with a somewhat clear head, there are “residual symptoms”.

Anxiety and paranoia. An ongoing battle with weight and eating habits (and not-eating habits). Still having trouble sleeping. The reckless nervous energy that is 50% me and 50% manic depression. A mild, niggling, irritating depression that blunts my experiences and emotions. Intrusive thoughts and panic. Narcissistically worrying about being narcissistic.

But this is good.

It was only a few months ago that I was ravingly psychotic, swallowing a huge dose of Lithium and on the verge of utter annihilation. Every little victory- the return from self-destruction- I cherish. To judge my sanity, I compare myself, to myself.

Every time I cast mind back to six months, a year, a year and six months, I’ve been ill. For most of my life, I’ve been ill. I’ve clung on to the merry-go-round of madness and am barely alive because of it.

So, while I’m feeling relatively together, here’s my sane guide to living with mental illness. Bear in mind it’s from the perspective of “been there” rather than “been told”. Feel free to ignore everything, though!

1. In times when you feel better, don’t expect the unexpected.

If you’re like me, this is much easier said than done. I’m a born worrier. I worry about everything. When I click “Publish”, I’ll worry about that, too. Talking about myself all the time? How self-obsessed. And in my self obsessed way? I’ll worry about that. I worry about everything I say, everything I don’t say, and everything I don’t do, and everything I do.

So I find it hard not to worry about the next episode of illness.

I know it’s probably coming, so I find it difficult to enjoy not being mad for a change. Experience has taught me that these lulls in time are the calm before the storm. I’m a rapid-cycler, and pockets of sanity are brief for me.

But, this time, I’m trying to think, “Maybe this will last longer than a few weeks”. You never know. So don’t try to will your next psychotic breakdown or manic episode. Relax, if you can. Take your medication, try to be okay.

2. Keep taking your medication, even if you feel better.

Ah, this old chestnut.

I’ve only been treated for manic depression for the past year and a bit. But every time I’ve felt “alright” and decided to ditch my medication and miss appointments, I’ve become ill again, very, very quickly. It has nearly always resulted in a messy hypomanic or manic episode and has meant that my antipsychotic gets upped to deal with the “crisis”. Or, there are times I’ve quietly skipped my medications and lied about it and become suicidal.

Something I believe, and have emphasized a lot here, is that mental illness is partly biological.

Sure, nature can embellish it, but I strongly agree with the idea that there is a biological basis for most mental illnesses- almost certainly some forms of depression, manic depression, anxiety, schizoaffective disorder, addiction, schizophrenia (their symptomatic similarities to biological illnesses such as epilepsy only strengthens my conviction) and possibly personality disorders, eating disorders and DID.

I don’t subscribe to the belief that mental illnesses are “labels”. Cancer, diabetes, asthma, etc, aren’t labels, they’re illnesses. And so it mental illness. Once I got past that, I found it easier to write with conviction, without worrying about “labelling” myself. I have got manic depression. Whoop.

I’m not on the gravy train of the “medication is evil”. It doesn’t mean I like to take them, though. I hate taking my medications, I always will. I hate the ritual, I hate the weight gain, I hate the exhaustion. I can see the argument- especially in countries where you pay for healthcare, such as the USA, and where medications are advertised like sweets. But if you take something and it makes you feel better, well, I think that’s okay.

And I don’t think people appreciate how difficult it is to continue taking medication for mental illness. On one hand, the side effects can be close to unbearable. I do entirely understand the stance that medication can numb you. But if I hadn’t been treated for manic depression- and medications are a huge part of that- I would most likely be dead.

So on the other hand, we come full circle to…

It’s not a cure. It’s to help you cope and live with your illness, to alleviate some of the more frightening and terrible symptoms that you are living with.

So when you feel better, don’t stop taking medication and don’t miss appointments, however tempting it might be. You might be feeling better due to sheer force of will, help from people, or maybe your illness just shifted somewhat, but, if you’ve been taking medications for a while, there is almost certainly something in them that is helping, too.

3. If it’s not working, say so.

Lithium made me physically sick and didn’t help at all with my illness. But because it was the “gold standard” for bipolar 1 disorder, I didn’t speak up, and quietly waited to feel better.

I never did and after the third or so bout of vomiting, shaking and passing out, I told the psychiatrist that I didn’t want to take it anymore.

Likewise, Seroquel helps me sleep, quells psychosis for the most part but it’s “antidepressant properties” are non-existent in my case and it turns me into a zombie. So I am being slowly switched to risperidone instead.

Of course, there may be times you can’t tell your medication or treatment in general isn’t working. So this one’s for those around you who know you- if you can, let someone know. I was manic for a while on Lithium and it was Rob who noticed I was, not me. Insight is an occasional companion sometimes.

4. Get support.

It can be isolating to live with mental illness. And not everything is as culture tells us it should be; lots of people don’t have close friends or family to rely on. And that isolates us further. Sometimes, family and friends don’t understand. Sometimes, you just don’t want to talk to them anyway.

There are support groups around the country that you can speak to and make friends at. The Manic Depressive Fellowship (now the much more PC Bipolar Organisation) holds regular local support groups, and The Support Line has some links and phone numbers for people with depression. Rethink also offer support groups for illnesses such as manic depression, depression, anxiety, schizophrenia and personality disorders, amongst others.Other “service user” groups include The Perceptions Forum, run by mad people for mad people, centering around the psychosis experienced by people with psychotic illnesses.

There are also tons of online forums that exist to support people with mental illness. A great one is The Mood Garden, which has forums for depression, self harm, anxiety and panic and substance abuse.

There are other good forums and support groups for problems such as anxiety and eating disorders.

5. It’s good to talk. Therapy is important too, but if you’re not going private, bring a book.

I was diagnosed with manic depression over a year ago and I’m still not in therapy. Medications can be good, but I think therapy is just as important. Having someone to talk to, learning ways to cope with an illness that you might have forever and taking the strain from ear-bashed loved ones is valuable.

I am finally speaking to a therapist soon- about friggin’ time an’ all. As biological as mental illness might be, sometimes, treatment is complicated. For example, I can’t take antidepressants. It’s been done a few times, and each time has been the same- hello mania. Treatment, then, is needed to help me cope with depression. I also have, as you know, Body Dysmorphic Disorder and problems with eating disorders, that pills don’t really help.

And even if you have a tidy mentally interesting diagnosis, life still happens, and it’s hard. Quite aside from regularly lapsing into depression because of my illness, there are life-things I struggle to cope with.

And again, it’s a little-thought line that dealing with the diagnosis itself it very difficult indeed. I still have trouble accepting my illness, however lucid and sage I seem here. Like any life-long illness, coming to terms can be hard.

The fall-out from episodes of illness can often be extremely hard to cope with. The strain it can put on your relationships, jobs, physical well-being, finances and other areas can sometimes be the beginning of a downward spiral. (After bad episodes of illness, I hate myself and feel so guilty and worthless I want to top myself. But there are always people I can’t look in the eye, and I find it very difficult to speak to friends and to manage the practical aspects). Psychotic episodes, in my experience, can be the worst as it’s a side of you people may have never seen before, and may find very hard to understand. It is really good to talk these things through.

So, if you’re being treated, push for therapy. You might have to wait a while, though. If you have specific issues (or your loved ones do), such as bereavement, substance abuse and “youth” related problems, there are many free counselling services around that you won’t have to wait so long for, such as Cruse and the Mind Guide to Counselling.

Also, never forget that if you feel you have no-one to turn to, there are confidential counsellors available by phone and e-mail such as the Samaritans. It’s their job to listen, and they can really help in a crisis.MIND also offer free counselling.

6. Mentalist- know thy services.

It’s not inevitable that you’ll need to go into hospital in an acute episode of illness. Whereas sometimes it may be the only option (such as needing to be sectioned for your own safety, and the safety of others), hospitals can be extremely traumatic. They are boring, above all else, and the surroundings can leave a lot to be desired.

If you, your “team” and those around you think you may need somewhere safe to be for a while, there may be other options. For example, there are crisis centres. I am lucky to have (and to be visiting next week with the CPN) a women’s only crisis centre.But look up mental health services in your council directory and ask questions. There may be a crisis centre near you.

You can also enlist the help of a crisis team if you want to avoid admission to hospital. Most councils have a community mental health crisis team who can give you ongoing support and evaluation at home.

7. If you can’t work, get benefits advice and help claiming them. And get someone to keep an eye on your finances.

I have been too disorganised and unwell to even begin to sort out my benefits. My CPN played a huge part in helping me, as did Islington People’s Rights. Now I’m finally on Income Support, Housing Benefit and DLA.

If you’re able, find out what to claim and how, and try to get independant help and advice from local people’s rights services or from the Citizen’s Advice Bureau. If you have family or friends, enlist their help in getting forms for you and helping you fill them out. There are also online services and resources such as the Advice Guide and Rethink.

When you have a mental illness such as manic depression, borderline personality disorder or schizophrenia, you might be, like I have been, impulsive and reckless with cash. When I’ve been working I’ve gone on many a manic spending spree and completely cocked up my finances. The “oh no” bank statement is not your friend, so, embarrassing as it might be, it can be a good idea to ask a friend or someone close to keep an eye on your spending for you.

8. If you’re reading this, you’re alive. Nice one.

Mental illness can equal terminal illness. It’s true that many people with mental illness will go on to commit suicide. Even with the best of care and support, it is not altogether unavoidable.

But being alive, day after day, is a victory. It’s not a failure, it’s not “being weak”. Whatever help you receive, it’s ultimately you who is responsible for yourself. So if you’re managing to continue living, no matter how horrible things get, even if in the past you’ve tried to commit suicide, you are alive and you should try to have some pride in your self.

Again, this is an “easier said than done” rule but I think it’s worth pointing out.That’s all from me for tonight- jesus, it’s a Saturday night. I’m going whip out the media player and turn on the lights so I can pretend I’m at a club or something.

I’ll be writing more trying-to-be-helpful things about living with mental illness in the future. Please feel free to suggest stuff.