I saw on Twitter today that Rethink is holding a campaign to challenge the stigma regarding mental illness. It got me thinking about what concerns me most because of my own experience with mental illness. I think I have three primary areas of concern: 1. Stigma and discrimination 2. treatment and recovery and 3. the 'experts' who work in the field.
[A note: I am lucky to live in a country and community that ensures access to mental health resources. I have good health coverage and, due to financial assistance from my parents for these services, I am able to go to and pay for Psychologists and access perscription drugs I other wise could not afford. Access is a huge issue, however, for many people and is major problem. While I don't think ill be talking about it much, as I dont have personal experience with it, I dont want people to think that because it is missing from my discussion I am denying its importance.]
Almost nine out of ten people with mental health problems (87%) reported the negative impact of stigma and discrimination on their lives. I know for me it has meant the loss of friends as well as opportunities (I was turned down as a volunteer for that reason alone). The most frustrating and hurtful affect of stigma has been the way it changes how people see me. I can actually see the moment in their eyes as their perception of me changes. (Of course, this may actually be the affect of my own internalized stigma assuming people will see me differently and perhaps I am only projecting this onto others.)
The hardest is the way my family reacts to my illness(es). Once my dad actually told me 'I avoid you when you are depressed because I dont want to be around you'. Another time, when I asked if he knew of any cases of mental illness in his family he told me 'there are no crazies in our family'. I turned and said, 'except me dad'.
My parents believe that paying for psychologists and perscriptions replace their lack of emotional support. While I could not access those resources with out their help, I feel they use it to assure themselves they are 'helping' when in fact they reject me and my illness when I am sick and pretend it is none existent when I am well.
Speaking of being well, I sometimes wonder how that comes to be. Naturally, it is claimed (in one of my psych text books), that often untreated depression will pass with time - often 6-8 months. While I have, it feels, undergone all the treatment available under the sun, I have to wonder what, if any of it, actually works. In my 4th year of Uni I took an Abnormal Psychology class. When we were learning about anti-depressants my prof informed the class that they have an effective rate of 75%. Sounds pretty good until you learn that 50% of that is placebo! Dont get me wrong, if something helps people to reduce their suffering, i am all for it, but antidepressants have the air of a miracle drug and yet are only proven to work 25% of the time; it is more affective to treat depression with sugar pills under the guise of the label 'antidepressants'.
I also find it quite frightening that researchers and scientists do not know FOR SURE how the drugs work. Sometimes I wonder why I am trusting a person in a white coat enough to put this mystery drug in my body. In a sense I consume a drug which shotgun sprays my system so that sometimes (25% of the time!) the drugs seem to hit the proper points and helps with the symptoms, while almost 100% of the time it hits numerous other (wrong) parts in my brain and body causing a slew of side affects. (my favorite side affect, because its quite funny, is how my perscription induces yawning!)
Of course, in my case and many others, I inevitably relapse after a period of sweet sweet bliss also known as 'normal' emotional regulation, and I end up being forced to make the choice of what route I will take for recovery as I have yet to find one that works effectively for me.
The 'experts' I visit all seem so confident as they suggest options of treatment but sometimes I feel they really have no idea what they are talking about. I put expert in scare quotes because while I do not deny their extensive training and their desire to help, we do not understand fully mental illness so how can someone be an 'expert'? They may be aware of the leading evidence and theories but when we look at the history of treating mental illness we see a very clear trend: A theory comes forward to explain the 'cause' of the illness (ex Hippocratic writers believed that too much black bile caused melancholy or what we now call depression - information from Manic-depressive illness By Frederick K. Goodwin, Kay Redfield Jamison, S. Nassir Ghaemi via Google Books), from which new treatments come to combat this cause (ex bloodletting to decrease black bile in blood). Today we seem the same thing: mentail illness is seen to be caused by the brain and neurochemistry, therefore we treat this supposed cause with drugs which target the brain (just as bloodletting targetted the blood). But truth be told we are still not sure HOW it is caused. I read in the book "
Mad, Bad and Sad: A History of Women and the Mind Doctors from 1800, that the recovery rates of today are very similar to the rates a hundred years ago. Clearly we do not have nor have we ever had 'experts'. I would be much happier if we recognized this fact and perhaps changed the understanding of professionals in this area as experts of mental illness literature and theory. But instead professionals in this area are seen as 'experts', those that hold the 'truth' of mental illness, even over those with a long history of experiencing mental illness.
I know I am not the only patient who feels frustrated when our experience of mental illness is sidelined because it does not 'fit' with the clinitians understanding of disorder. I have a psychiatrist who changes her diagnoses of me almost each time I see her. While it is 'just a title' for the problem i have, it affects which drugs she gives me. Last year my psychologist encouraged me to see a psychiatrist. After our first meeting she diagnosed me with depression and started me on drug A (I am not going to list names, I do not advertise for drug companies). at our second meeting she decided i had some 'bipolar tendencies' and put me on drug B, a anti convulsant used to manage mania in those with bipolar. At our third meeting we decided to add Drug C to my mix, another antidepressent that would help with mood but also combat some of the side affects of drug A. When I went back the fourth time and spoke of my concern that perhaps i needed Drug A or C increased she told me that it seems I also had some borderline personality disorder characteristics and because of this, refused to increase my dosage becuase the symptoms where probably just there on account of the BPD.
All of this is not only terribly confusing but scary as hell! After chatting with me for 20 minutes she decides drugs to put me on and levels to fiddle with and also will withhold drugs because of new diagnoses she sees that she didnt see before? I no longer trust her as a doctor, but continue to see her because GPs are typically uncomfortable adjusting drug A or C becuase they are not familiar with drug B. Now, when I decide to see her, I go with a plan. I tell her exactly what i think i need and she just gives it to me with not much question (typical for Uni doctors I have found).
So where does this leave me. Well it leaves me stuck in a whole crap load of confusion, thats where! Ha
As I said in my introduction post, I dont have the opportunity to discuss this with friends or family and definately not my psychologist or psychiatrist (who i feel are always thinking 'oh this is a symptom' becuase that is what a BPD diagnoses allows!) so its nice to rant here. But at least I am in a good enough place to be able to laugh about it now.
Anyone have any thoughts? Similar experiences?