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#BellLetsTalk : Real Talk and Hearing THEIR Voices.

January 31, 2018

 

Today is #BellLetsTalk day. This is one day each year that is devoted to bringing awareness and money to a cause that should be discussed each and every day. I work in a field where I am inundated daily with stories from brave individuals who are literally fighting a battle in their brain each and every moment of the day. I cannot keep up with the demand and  I have to turn people away - it feels horrible. My message this year for #BellLetsTalk is let’s listen, let’s hear the REAL stories and let’s talk about what needs to change. 

 

I feel funny even mentioning this as, to me, it is so blatantly obvious: mental illness is devastatingly misunderstood. We are living in a period of crisis right now when it comes to rates of depression, anxiety, suicide risk, addiction, overdoses and unfortunately the list goes on. We continuously brush it under the rug and our current health care system acts as a big band aid when dealing with an issue as complex as this. The system needs a complete overhaul and we cannot rely on it to be there when we need it. 

 

The problem is multifaceted. Changing diagnostic criteria, demand for services, lack of resources, lack of understanding and finally lack of patience. You see, getting better from a mental illness takes a long time. Anyone who tells you it doesn’t is not being truthful. This is not something that you can go to the doctor get a pill and have a quick resolution. This is something that requires a lot of trial and error. It requires frequent appointments. It requires a holistic approach to care. It requires a lot of support and It requires an effort that goes beyond what our system can offer. 

 

If you have not been saving since childhood for your therapy bills, then you are likely going to be faced with hardship when it comes time for you to get help. Private treament costs tens of thousands of dollars and private therapy can be upwards of hundreds of dollars per week.  If and when you decide to take the step towards getting help you will be met with assessments, waiting lists for assessments, then waiting lists for treatment.  It will be very difficult to access the care you need when you need it, even private therapy has waiting lists. Imagine trying to reach out and ask for help with something that feels so inherently wrong, and then being met with this resistance?These barriers?

 

When I thought about doing this piece for #BellLetsTalk my immediate thought was I can’t. I have had a very challenging year in terms of awareness. I have been working for almost 10 years volunteering on numerous committees trying to make change, and it just is not happening fast enough. I quite frankly need to recharge my battery so that I can find the motivation to keep working towards raising awareness for this cause, but for now I decided- Let’s cut the crap and hear the stories that matter. Let’s hear from the individuals themselves about how they feel and what people should be talking about.

 

I asked my clients, current and past if they would help me. I asked them to reflect on the following questions and participate anonymously to help let other’s hear their voice. 

 

  1. What does mental illness feel like to you?

  2. How did the system help/fail you?

  3. What are the biggest misconceptions you see?

 

 

Of course a lot of them didn’t think that their answers were good enough, and some didn’t have the ability to put things into words right now. Because that is what happens when your brain is too dark to comprehend things. 

 

Take a breath and hear their voices: 

 

What is Mental Illness to you?

-I feel like no matter how fast or how long I run, I can never outrun the monsters in my head.There are days where breathing physically feels exhausting, and it literally takes so much of my energy reserve to just breathe, while I am also still trying to multitask and do everything a healthy person would do, in addition to hiding my own pain.

 

-It is silence, feeling that it's not safe to be real or speak openly about how I'm really doing or what's really going on.  

It feels like drowning, when I logically know I am on dry land and have no "legitimate" reason to feel this way (except for the tsunami of assorted mental illnesses); to feel like I can't catch my breath and find reprieve, no matter how hard I try.

 

-Fighting to recover feels like it's weakness and shame, going against everything you've known and your brain has told you nearly your whole life; it feels wrong on every level. 

 

-Mental illness is feeling broken beyond repair.  It's feeling guilt and shame and self-loathing. It's frustration that your pain is not visible and thus, it feels "not valid" to your sick brain.

 

-It feels like wild thoughts and wild emotions the fuel the overwhelming urges to hurt myself and self-destruct, because I know that's the only way I can find some temporary comfort and reprieve.  

 

-It feels like I cannot trust myself at all.  I cannot trust my emotions, or my thoughts, or my body.  Because they've betrayed me for so many years, that I have no idea what is real.  

 

-Mental illness feels like one giant contradiction. Part of you knows you cannot trust yourself — your own mind — but the idea of trusting anyone else is terrifying. You are tossed from one program to another, constantly being told you are too sick for treatment but also that you are functioning too highly to warrant any form of intervention. Your illness is a badge some can wear proudly, since they have overcome their demons — but letting others know that you are still in the trenches would carry with it unimaginable shame. It's desperately wanting to attain happiness while simultaneously loathing yourself so much that you refuse to consider a future where things could be different — could be better.

 

-Mental illness is being told to talk and realizing, over and over, that no one is really listening. Mental illness is a special kind of hell lurking where you least expected it: here and now, waking up every morning in the same place you've been for over a decade and knowing nothing has changed (but hoping desperately that it one day will).

 

-To me, when you are in a bad place, it feels like something that makes you different or un-relatable and makes you disconnected from others. Sometimes it’s something you feel like you have to hide, or it will become all people see you as. When you learn to live with it and be open about it, it can be liberating and be something that you start to champion for others. It’s more pervasive than you realize and it’s something that exists in degrees in many people. 

 

How has the system helped you? Hurt you?

 

-I think the system failed me. The first failure was obvious: I asked for help explicitly for my eating disorder in a moment when I thought I could and wasn’t taken seriously. I was disregarded and my issues were minimized. I wasn’t sick or skinny enough to get help and I didn’t look like a stereotypical anorexic person so I must be fine. The second failure was subtle: it was uncomfortable for people to talk about my eating disorder or what I might need from a health provider, so you were taught to hide it, which only deepened the shame I felt. I also saw the system fail my dad, who was an alcoholic. It fails in so many ways and once you do get help, it’s difficult and very costly to retain it. It’s all not set up  ensure you transition to regular life successful.

 

-The most significant way the system failed me was striving to 'fix' me based on standardized, misguided principles of recovery — masquerading as 'evidence-based treatment' — with no regard for individuality, autonomy, respect, and personal values. The most ironic aspect of this was that they not only failed to break my illness... they utterly and completely broke me in the process. I understand the difficulties inherent in treating eating disorders, especially when there can be an extreme lack of insight (such as in anorexia nervosa), but I stand by the idea that working with patients rather than against them will prove most beneficial.

 

 

-I think the system failed me. The first failure was obvious: I asked for help explicitly for my eating disorder in a moment when I thought I could and wasn’t taken seriously. I was disregarded and my issues were minimized. I wasn’t sick or skinny enough to get help and I didn’t look like a stereotypical anorexic person so I must be fine. The second failure was subtle: it was uncomfortable for people to talk about my eating disorder or what I might need from a health provider, so you were taught to hide it, which only deepened the shame I felt. I also saw the system fail my dad, who was an alcoholic. It fails in so many ways and once you do get help, it’s difficult and very costly to retain it. It’s all not set up  ensure you transition to regular life successful.

 

 

-The system has failed me as both a child and an adult.  As a child, the system placed too much responsibility on my parents.  Mental illnesses are complex illnesses affected by biological/genetic, environmental/social, and psychological factors.  This means that in many cases, parents of children with mental health challenges also are dealing with some version of their own mental health challenges, which can make it potentially more difficult for them to advocate for their children's access to services. 

 

-As I became an adult, the system failed me once more.  As I struggled with anorexia, depression, anxiety, self-harm, and suicidal thoughts and urges as a young adult, I was given the message that I was either "too sick" or "not sick enough" when I would finally reach out to try to access various mental health support services. After attempting suicide, I was even told that "we are all intelligent people here, and so if you really wanted to kill your self, you would have just done it (better)". I was taken to the emergency department after that, but released the same night, with a bandaged wrist and my way-too-easy lie that I would reach out to crisis support if I felt this way again. A few days later, I ended up in emerg again, but still was sent home because apparently I still wasn't "suicidal enough" for the limited resources that are available. Additional barriers come when access to treatment services requires specific diagnosis/diagnoses. Certain treatment programs are also often unwillingly to deal with comorbid diagnoses. As there are not always/often integrated services to address more than one (or two) diagnoses simultaneously, treatment services end up lacking cohesion and mixed messages are sent. It makes it incredibly difficult to access care, and even more difficult when the support available if allowed based on certain diagnoses/symptoms or misleading medical information (in the case of weight criteria for eating disorders). Wait lists are long and in those very long months waiting for treatment, I've had time to relapse and get much sicker. There have been many times I could have and should have died, but it didn't matter because I was still "functioning", and thus, slipped through the cracks. Treatment programs I have participated in also have emphasize behaviours and ignored the emotional and psychological torment still occurring, despite me being able to follow behavioural rules. 

 

 

Biggest Misconception:

-That in order to be seriously mentally ill, you can't also be functional in many areas of your life.  This misconception unfortunately exists even among many professionals in the mental health field.  The fact that I can still go to work and volunteer and do what I absolutely have to do in a day, mechanically forcing myself to go through the motions and routines that structure my life, does not mean that I am not seriously sick.  The fact that I can often hide my tears and scars, or have gained enough weight to no longer fit the stereotypical image of a person with anorexia, does not mean I am now "okay" and don't still need support and compassion.  Functional does not equal well.  Surviving does not equal living.

 

 

-The biggest misconception I see is that it’s an all or nothing thing and that it’s something you never recover from. Just like broken bones, you can heal from an eating disorder or any mental illness but you need guidance from a professional to get there. You can recover. Mental illness comes in all forms. It’s possible to have unhealthy behaviours or thoughts and carry on a successful career or relationships. Everyone can benefit at some point from help.

 

-There are so many misconceptions around mental illness in general, and scores more surrounding eating disorders. I think one of the most frustrating myths I continue to see perpetuated — as both a patient and someone training to eventually work in the field — is that individuals with mental illness have in some way chosen their path. Nobody chooses to become ill, stay ill, or otherwise deteriorate: we accept this for 'physical' ailments quite readily. But at the end of the day, despite the awareness campaigns and revealing memoirs and open letters and documentaries, we still judge the real people around us who are struggling. Our minds and our bodies are inextricably linked, and although it can seem like we have more control over our brains than we do over a cancerous cell, they are every bit as vulnerable to the biological, social, and psychological factors that shape our existence.

 

That patient did not decide to skip their appointment to spite you. They did not make an attempt to end their life to inconvenience you. They are sick, and they deserve compassionate, empathetic help in a form suitable to their preferences and unique needs.

 

 

Now, the point of doing this on THIS day is to raise MORE moola. So although I am not a social media guru, BUT  I have many more important stories reflecting on the above questions that I will be posting throughout the day to raise awareness and money. 

 

Please go to my social media accounts and follow, like and  comment #Bellletstalk on the posts so that we can really make use of this day and make a difference. 

Instagram @carlycrawfordfyvc

Facebook: Find Your Voice Counselling

Twitter: CarlyCrawford1

 

I want you to take some time to read these responses. I want you to imagine that you or someone you love may one day have to deal with some of these thoughts themselves. I want you to imagine that there is a 1 and 5 chance that you will have to access this care yourself. 

 

My advice to you on this day of talking mental health is to take a moment and recognize your place, your advantage, your disadvantages your role in this problem. I want you to think about what YOU can do, and perhaps what you NEED to do to better understand this. 

 

Mental Illness is influenced by the complex nature of things like genetics, neurology, and our culture. The only way we can help this cause is by gaining awareness, action and understanding. 

 

This is not a virus, it won’t just go away. This is an infection and it will only get worse if left alone.

 

Let’s Talk- but let’s get REAL. 

 

A BIG thank you to everyone I work with. Whether you were able to participate or not, the work I do is to make things better for you.

 

You are on your way to Finding YOUR Voice. 

 

 

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© 2016 by Carly Crawford.