I’m sitting in a Starbucks. I was here yesterday, too. The day before that, I went to Costa. Rather than doing this to feed my usual coffee addiction, I’m doing it to be connected to the outside world. I’d much rather be home.
On 1 January, we had a storm that dislodged something in the wiring for our phone line. That day, just before 3 pm, I called BT to get the issue worked out. The earliest engineer appointment they could offer was Tuesday afternoon. We waited. We went to coffee shops. We felt increasingly cut off, particularly as we live in a rural area with limited mobile coverage. Depending on what room you’re in, or even which part of a room, you can lose signal completely.
Yesterday, during the 1 pm to 6 pm window, at around 4:30 pm, I had a call from Openreach saying that the engineer simply wouldn’t be coming out. No reason given, no apology, no explanation. The earliest appointment they could give me was Thursday afternoon.
I called back later to explain the seriousness of our need for a phone and was told nothing was available. When I tried to ask for a supervisor, my call was disconnected. I called back, only to get a message about long wait times and that my call was in a queue. If I wanted, though, I could use BT’s helpful online self-service portal.
Right now, having a phone line and a broadband connection is a pretty significant need. Much of the work I do as a writer requires me to be online. Having no phone or internet for a week means no income for a week. But it also means much more than that.
For the past few months, I’ve been dealing with a pretty severe depression. I have had appointments every week, sometimes more than once a week, with members of the local mental health team. We’re working on getting me through this, but I’m not there yet. I’m very far from ‘there’.
There’s a lot I could say about why I’ve swung so deeply into depression. Changes in my life, changes in medication, and the holidays are but three of the items on a very long list. Regardless of why I ended up in these doldrums, I’m here now.
It’s not a pretty thing to talk about, but a real problem with depression is the risk of death. I hate writing it, but there’s a very real risk of suicide with this level of depression. There’s the potential that my husband will need to call emergency services because of my illness. Without a phone, that isn’t possible.
Although it wasn’t mentioned as an option in any of my phone calls to BT, even in the one where I explained that I need a phone line because of ill health, they do offer a Priority Fault Repair Scheme. This service offers those with serious health problems the ability to jump the queue of service requests.
The problem with this scheme is that it is limited to those who meet a very specific set of criteria:
You, or someone who lives with you, are registered as Chronically Sick & Disabled by your local authority social services under the Chronically Sick & Disabled Persons Act (CSDPA) 1970
Incapacitated and therefore housebound, due to a chronic long-term illness or disability which prevents you leaving the house without the assistance of another person. For example, on the National Organ Transplant waiting list.
While this will cover a large number of people, it leaves those of us with severe mental illness in a bit of a grey area. Applying as a disabled person with a local authority is notoriously difficult when doing so for mental health reasons. Even with psychiatric care, the burden of ‘proof’ is difficult. Mental illness is a hidden disease, one that people don’t like to talk about, and one that is largely misunderstood.
The need for an active phone line is also a psychological issue. For me, and many others with mental illness, being online has offered a way to interact with the outside world. It’s a way of being connected to society, even when you aren’t well enough to do basic things like get out of bed, shower, get dressed, and walk outside.
Being online is a way for me to contribute to my family’s upkeep, too. It’s a way I can bring in some pittance of money, giving me a purpose when I’m not well enough to be the primary caregiver for my son. Even if I’m not a very good wife when I’m not well, I can offer something to my husband in this way.
The feeling of isolation that comes with depression is crippling. When you aren’t well, the thoughts of your worthlessness are overwhelming. Being cut off from the rest of the world, however virtual they may be, leaves you with nothing but these intrusive thoughts of worthlessness.
The need for communications — phone and internet — in modern life are essential for most people. The most basic elements of life are only handled through these means. For those with mental illness, the need is even greater, something I’ve felt with some severity this past week.
While my service will — hopefully — be on in a few days, I’m sure there are others who aren’t in a position to argue their side for service repairs. When in the grips of the darkest depression, it is difficult to communicate your needs, and even more difficult to launch into discussions of service repairs with a noisy call centre. I know that, in some of my worst depressions, the cacophony of accented call centre representatives over the crackly mobile line would have set off a bout of paranoia. The murmur of voices was always a problem for me when I dipped into psychotic states, a type of life that was so horribly painful, I often felt the only solution was to end my own life.
I’m not alone in this, either. But there are no options for sufferers of mental illness. We don’t have access to faster service for repairs, or even the understanding of most members of the public. Without a phone or internet, I don’t have access to the emergency services that could save my life, or a way to find out the contact information for local support options.
My problem is something that needs to be addressed. It’s the intersection of rural coverage and mental illness being seen as the serious issue it is. It’s something that is being ignored by BT and others. It’s something that could be a matter of life and death.
This past week was everyone’s favourite holiday, Mental Health Day. It’s that one day of the year where all flavours of crazy get to openly talk about stuff on the news and everyone pats themselves on the back for how far we’ve come and how there’s totally no stigma whatsoever anymore and treatment is there if you want it. And then the next day we can all go back to the reality of the situation.
My reality, which I’ve openly written about on here before, is that I’m bipolar. I tend towards depression, which is why I was initially misdiagnosed and treated for unipolar depression. That triggered a pretty massive mania, which messed up a lot of things in my life, but got me the right diagnosis. When I’m at my worst, when I hit absolute rock bottom or soar to Himalayan heights, I get the fun of what are referred to as ‘psychotic features’, too. If you ask me my full mental health diagnosis, my answer is always ‘I’m Bipolar I with psychotic features’.
Of course, reading through all the many posts that came out on the aforementioned holiday, it seems that I’m in a minority with that. There are plenty of bipolar folks out there, some with the same diagnosis, but there seems to be a backlash against the ‘I am’ part of my statement.
It seems the more popular choices are to say ‘I have bipolar disorder’ or ‘I’ve been diagnosed with bipolar disorder’ or ‘my diagnosis is bipolar disorder’.
It’s a subtle difference, but an important one.
While I could easily say bipolar is something I have or have been diagnosed with, like you would say you have or have been diagnosed with arthritis, it doesn’t seem quite right for me. To me, bipolar is the fundamental description of my brain. It’s not an ailment, it’s part of who I am. Without bipolar, my personality, my achievements, my life would not be what it is.
I am bipolar.
It’s also acceptance that it’s not something that will ever go away. While medication can keep me stable, balanced carefully between depression and mania, it will always be a balancing act. I’ll always be up there, teetering away with the risk of tipping to one side or the other. One combination of medication might work for years, and then stop working. Something else might change that makes it impossible to take those medications. Underneath all of that, I’ll still be bipolar.
Right now, I’m in one of those teetering stages. After giving birth, I’ve had to change my medication. What was working before I was pregnant, and through part of my pregnancy, no longer suits me. It makes me very drowsy, which was great for my occasional insomnia and pain issues, but not great when you have a toddler. So with the depression lingering around, I went to a different medication. It didn’t work. I switched to another, and it gave me unacceptable side effects.
Today, between when I started writing this and when I’m now finishing it, I had another appointment to discuss my medication. Bipolar depression isn’t an easy thing to treat, especially when sedation has to be avoided. The two-page list of medications I’ve tried in the past only complicates things more. While I’m at this stage, though, we have the ability to try things out. I’ve been in situations so dark there hasn’t been that luxury. I’ve been at points where hitting things heavy is the only choice, and the only way to keep me alive.
I am bipolar because I’ll always be bipolar. There will never be a day where I wake up and no longer have it. There is no hope for a cure. And, honestly, I wouldn’t want it if there was. Because I am bipolar. It’s not a disease or a disorder or a syndrome. It’s a whole package of traits that I wouldn’t want to give up, a club whose members I am proud to stand with. It’s who I am.
It’s been over a month since I wrote anything here, or anywhere really. A month and a half of days and nights, of struggling against my own disintegration into nothing.
I’m not one to hide from my oft-stigmatized diagnosis. I’ve written about it here and elsewhere. I don’t see much point in hiding it, or even blatantly lying about it (how many of us have said our psych meds are for ‘headaches’ or ‘insomnia’?), since anyone who knows me for any length of time will come across me at some point when I’m in the fog (Eleanor Roosevelt referred to her depressions as her ‘Griselda moods’ and for some reason I’ve always liked that).
For the past month and a half, the fog has coasted over me, drifting in and out as it wishes. Some days are productive, with only a mild haze here and there. Others have left me unable to see in front of me. (I know the whole depression as fog thing is overdone, but it’s a very handy metaphor nonetheless.)
For the past month and a half, I’ve done what I can to keep myself going. I’ve put up a good fight, too. I’ve done a few bits of writing work, and have several part-written posts. There’s even one about mental illness on TV. It’s not bad, but I couldn’t just ever quite get it finished. Here’s a part of it (I may as well put it here; I doubt I’ll finish it):
This isn’t the first time I’ve written here about mental illness, and I’m sure it won’t be the last. It’s something that’s constantly on my mind, if for no other reason because it always is my mind.
Mental illness, in all its forms, is always going to carry some sort of stigma. No campaign or television show is going to change that. At the very base level, those of us who are sick in the head are sick in the head. There’s something wrong with our brains, chemically or structurally, and we function differently. That difference in functioning will always put us apart from ‘normal’ people.
Since we’re always going to be different, and always going to be seen as being different, what’s the point of all these campaigns and television shows?
Over the past month or so, I’ve seen a few calls for participants for television shows. The stated aim of these is always some feel-good line about showing that mental illness sufferers are no different than any other person. They want to show mental health problems as insignificant. They want to diminish the importance of mental illness while entertaining audiences through the othering of the mentally ill.
Attempts to be inclusive end up being exclusionary. The mentally ill are normal people, these shows say as they corral them into a separate programme. If the mentally ill are normal people, they shouldn’t need to be placed into such programming.
Not bad, but it wasn’t going anywhere in particular, and I couldn’t bring it back to what I wanted to say. What I really wanted to say. What is it that I really want to say?
I don’t know.
Part of this fog is a murderously ferocious self-doubt. With everything slightly blurred, nothing seems right. There’s always something wrong with what I’ve done. The more I think about it, the more I find wrong. The only way I know how to survive this is to stop thinking about things. To drop it and move on. To cut my losses, even if it means never achieving anything.
In the past month and a half, I’ve tried to figure out what I want to do, and what I can do. But everything comes back to the fog. Everything gets killed by the fog. Today it’s been making things difficult, as it has done for a month and a half.
I’m fighting, though. I’m trying to fight it. I’m trying to get through the fog. I don’t know if I’m succeeding, but I’m trying to fight.
So here’s another pointless blog post, floating out into the world for all to see, and in the vague hope that if I just write something — anything — I can push that much further out of the fog.
The Time to Change campaign isn’t new (according to its site, it’s ‘England’s biggest mental health anti-stigma campaign’ and boasts of accomplishments for 2011, 2010, and 2009). The concept behind it isn’t new. So why does it bother me so much lately?
Simple. It’s everywhere, and it’s a bit offensive.
The current media blitz from TTC is the ‘Time to Talk’ campaign, in which ‘normal’ types are urged to talk to the crazies. See a crazy at work, in the shops, on the street, and throw ’em a bone. Ask how they are, because crazies aren’t scary, just a bit wrong in the head. (If you haven’t seen the TV ad because you’re not the TV sort or live out of the UK, you can watch it on YouTube.)
But while the intent here is to make mental diseases no different than any other disease, there’s something slightly sinister. Mental health problems aren’t a cold. They aren’t something that you take a few days off with and then go back and are all better. Being asked about your mental health disease is kinda like being asked how that genital herpes is treating you.