I was untreated for eighteen years… for some of them I was homeless, for almost all of them I was surviving on two dollars a day. What I was capable of was making an appointment and, eventually, getting to an office for an assessment. But I was incapable of making the plans necessary to carry out any reasonable treatment.
What I needed was someone to offer me the things I wanted, but couldn’t get. What I needed was one of the many doctors I asked for help to offer me a plan. What I needed was my family to take an active role in helping me get better. What I needed was an intervention.
In between being diagnosed with manic depression and finally finding a treatment which works for me were a lot of years of pain, suffering and general abuse… I was abandoned by friends, my family ignored the disease and blamed me for my behaviour, and the doctors I went to for help left me to the vagaries of the mental health system as though I should have understood the processes by virtue of needing them.
This particular Old Post Day is about how I think the mental health care system should operate…
A Perfect World Would Start With An Intervention
January 12, 2007
We can spend so many years trying to convince people of how sick we are then, when we’re finally diagnosed, we’re left by the health care system to fend for ourselves as if our family and friends network was fully formed and operational, as though we have a working understanding of what the disease is doing to our minds and bodies, as though we should know and understand what the medications will do to our minds and bodies.
I keep hearing and reading about “Perfect World” responses. In a perfect world someone with manic depression would have understanding parents, a group of witty friends who look and act like Emma Thompson and Hugh Grant, a doctor who is available on a moments notice, medications which work the first time exactly the way the available literature says they’re supposed to work. Well, what the fuck? What other disease, or group of diseases has to rely on a Perfect World scenario to get the patient through their initial treatment phase? And when — just when — just one fucking time has it ever happened that a person with Manic Depression has ever had a “Perfect World” scenario? Why are we, the mentally ill, left to the vagaries of the Perfect Scenario?
Why are our doctors, once THEY’VE made the diagnosis, not making sure our families are in the room so the explanation can be made by THE DOCTOR as to why we’ve been such shitty fucking children over these many years? Why are our doctors not bringing dietitians into our appointment if diet is so important to our recovery? Why are we not being handed massive amounts of Vitamin D along with our Lithium? Why, if sleep is so all fucking important to our recovery, are we not being handed a sleep aid along with our Lithium and Vitamin D?
Why does it take so fucking long for people to tell us that, “yes, in fact, your bizarre sleeping patterns are, in fact, quite abnormal and, yes, in fact, there are ways to manage your sleep with medications, in fact”? Why, with a disease that fucks with OUR MINDS, is it assumed that we have an understanding of the disease on par with that of the doctor? Why is it left to us to inform family, friends, co-workers, bosses about the effects of the disease as though we had written the DSM-IV?
We fight so hard to get into that room and when we leave we’re convinced that, finally, everyone who is important to us, everyone who loves us and who we love, is going to ‘get us’, but they don’t. And that’s a crime. We need more than we’re getting, especially those right at the beginning of the process, and especially from a “mental health” system that has been leaving too much responsibility for too long in the hands of people who — for most of our diseased lives — want nothing more than to slide a fucking razor across our collective wrists.
There was an engaging discussion in the comments when this was originally published.
There were also some quotes from some of my writings from 1992, when I was completely untreated and desperate to understand the process of getting better. Which, at that point, meant getting free Lithium pills from the pharmacy and then taking them only when I felt bad.
Which is not a good idea at all.
There was one person who commented who believes manic depression doesn’t exist beyond the symptoms, each of which, according to her, can be dealt with by performing meditation. And another who decided the entire post was actually about insomnia, who then got upset with me when I suggested tea was not a good way to treat a sleeping disorder brought on by manic depression.
I sympathize with you and the way you’ve been treated. I’ve been given some bizarre advice by people who know nothing of what they’re talking about, but some of the worst I think has come from people who should. My son suffers severe behavioural problems and after an incident where he self-harmed and ended up in hospital, I was told by a very experienced social worker, I “should go home and have a lavender bath”. I would have laughed had the situation hadn’t been so serious.
After recently suffering a depressive meltdown and taking an overdose, I found myself in the same hospital and being assessed by the mental health psychologist, (I’m in Australia). I wasn’t formerly diagnosed with anything and they were pretty sure I wasn’t going to do it again. So, they decided to ween me off the medication I was on over the following week at home, which left me suffering the worst withdrawals I had ever suffered, even my eyeballs were dizzy. We trust these people to know what they are doing…we trust them to do the right thing by us….eventually we discover the only people who know how to do that are us.
I have only recently discovered this site, and reading the blogs and experiences of other people who are going through exactly the same thing is going to be a big part of my recovery, as well as being able to write about my own. We deserve respect from the average person to wake up every day and gather to us the strength to go on….not be villafied for suffering a disease that can’t be seen.
People who are mentally ill unite! We will one day be free.
[edit: Sorry shirlock44, I had to take the link out of your name because the address was corrupted (shirlock44@wordpress/.com.au), if you have a blog or site you’d like to use please leave a note here.]
Hello shirlock44, and thanks for the comment. There are abuses in every system, and definitely in the mental health care systems of every country, but there’s a greater threat to people like ourselves in not being able to access those systems. My experiences inside the system, after my diagnosis, were relatively benign — there were no overt abuses. No one made me cry, no one made me bleed, I was never on medications long enough to find out if there might be withdrawals.
My own problem was the system is not designed to keep us coming back. The Canadian system is relatively easy to get into, if we’re hospitalized there are out-patient programs… and most of the pills are covered through Provincial Health Plans, and the ones which aren’t are subsidized. But the system doesn’t include any support system, there are a few programs for relatives who want to learn about manic depression or other mental health disorders and diseases, but what really happens is we see a doctor who evaluates us, then offers a diagnosis, then we’re assigned medications or therapies, and then the rest is totally up to us — the people who are sick.
Manic depression has a higher kill rate than cancer. Suicide in Canada is a leading cause of death… yet our support systems are ill-funded and because of the general ignorance surrounding the disease our families mostly think that because we’ve been diagnosed, and because we’re got a prescription, we should get over ourselves.
Thanks again for commenting, I hope to see you back again.
When I think about the stigma that is attached to mental illness and how it affects treatment I tend to shudder. When I was first diagnosed my doctor talked about recovery, when my diagnosis reached #3 recovery was still possible but the day I brought up that I thought I had Borderline the word recovery has never come back up to the surface. I am Canadian (just like the damn commercial) and it seems the system at least where I am is built for “simple” diagnosis: If you have substance abuse go to door one, if you have depression go to door two, if you have concurrent disorders try again later. Sorry for the ramble. take care