The Experience of Having a Mental Illness: A Personal Note to Care Givers

Introduction

Last week I had another slip into depression. It was painful, frustrating and it reminded me how vulnerable I am to suddenly losing my emotional footing and sliding down the slippery path of emotional well-being.  As it often is, the slip was precipitated by repeated frustrations and perceived losses with my work accompanied by feeling misunderstood by my wife who I know, even at the time is trying her best to understand me and provide comfort and guidance in the best way she knows how.

  

It is this misunderstanding that so often happens between people who have a mental illness such as persistent depression, bipolar, schizophrenia, panic or anxiety disorders and many others and their spouses, parents, children, siblings and other care givers that I want to address this article to.  I will do my best to describe and explain from the point of view of someone with a chronic mental illness what it is like to have this illness and try to communicate how it affects us to those who care about us but quite honestly, just don’t understand how and why we feel, think and act the way we do sometimes.

The Experience of Having a Mental Illness

The experience of having a severe and persistent mental illness is perhaps one of the most disempowering experiences a person can have and most difficult for others to understand. It is difficult to describe the experience of watching your mind and emotions take on a life of their own when your illness becomes active. For many of the clients with schizophrenia I’ve worked with it can be horrifying as your worst fears can begin to take shape as unstoppable mental pictures and/or vicious, accusing voices as your ability to organize and direct your thoughts evaporate. For me personally and many people with depression it begins with that painful, empty, sinking feeling in my heart, the sense of falling into a dark emotional abyss and the gripping fear of losing all sense of self. 

These perceptions, thoughts and feelings are experienced by the person who is having them as involuntary and often overwhelming.

They are not fake, made up, or exaggerated as a way of getting attention, avoiding responsibility or playing the victim. The experience of mental illness is victimizing when you are experiencing it. From the perspective of the person experiencing these perceptions, thoughts and feelings they are a victim of the illness. They don’t want it, they didn’t ask for it and they cannot consciously, voluntarily shut the illness off.

Now, that doesn’t mean that people who have mental illness haven’t learned how to use their illness as a way to get what they want or to avoid responsibility. This happens quite often.  However, these behaviors are often the result of repeated failures at trying to honestly explain how they genuinely feel to those who care about them; sometimes because explaining these experiences is extremely challenging even for someone who has the tools and is skillful in communication or because the person who is listening has no basis of common experience to truly understand what is being expressed. 

If you yourself have never experienced a severe and persistent mental illness, you really, truly do not know what the experience is like.

And, this is the heart of what is most frustrating and disempowering for people with severe and persistent mental illness. Many care givers will say “I understand, I know how you feel, I’ve been through (something like) that before myself and this is how you get out of it.” And, then they will offer their advice on positive thinking or, just stop thinking about it or, get out and do something or, read the bible or, stop feeling sorry for yourself, etc. And when we either tell them they are not listening or don’t really understand us they will get frustrated that we have not followed their advice and in their frustration will say we are playing the victim and if we really wanted to we could “snap out of it.”

A Personal Note for Care Givers

I’ve been married for nearly 25 years now and my wife has endured some of my moderately severe depressive episodes although she had never seen me nearly catatonic in bed for weeks at a time unable to function in any capacity which was my first severe break. Even now it is difficult for her to really understand how I feel. As I explain the experience to her I can see her trying to grasp what it is like but having no foothold from her own experience to relate it to. There is still the question in her eyes: “Why don’t you just let go of it and move on (the way I do)?”

Here is my advice to care givers who are caring for somebody with a severe and persistent mental illness:

1. Do not expect that you can or should know what your loved one is really experiencing, you probably can’t. You can still appreciate the difficulty and hardship that their illness is having on them (and you and the family) but do your best not to demand that you should be able to completely understand what it is they are experiencing.
2. Do not tell the person you are caring for that you do understand when you do not. It is much better to be honest in a compassionate way. Instead tell them you wish you could understand them completely but you have not experienced what they have and the best you can do is to accept them for who they are.
3. Do your best to appreciate that when the person you are caring for is actively experiencing their mental illness at that time, they are victimized. They are a victim of their own mind that has overwhelmed their sense of independent self. They cannot by force of will snap out of it and regain control of their thoughts and feelings. 
4. Do your best to listen and empathize without being drawn into a secondary victimization. As a care giver it is very easy to lose your sense of self to the pain and victimization you secondarily experience from the person you are caring for. It is indeed an art to be able to share in another person’s pain without being consumed by it.