May 11, 2009

A Different Kind of Grief

And no, not necessarily a "good grief". ;)

At the start of this year, if you had asked me what I thought grief was, I would have talked about sadness about the loss of a loved one. Since that time, my understanding of it has become more nuanced. While I believe loss of a loved one, from something such as death or even moving away, is the biggest cause of grief, I've also come to see that it comes from other areas, too.

My biggest discovery of the last few months is that there is a lot of grief surrounding mental illness. I first saw it in family members of those who had a mental illness. After that first realization, I was a little bit dumbstruck at how I could have missed it before. I did some reading on it and it really became a bit of a focus for me. When talking with someone who was struggling with a family member that had a mental illness, I heard how much they wanted the "other version" of the person to return. They would talk about what potential this person had "before" and how they just couldn't keep up with their siblings and they have had to "lower expectations".

I later was able to see a little bit of it in the people that had the mental illness themselves. The "I used to be able to..." and "I remember when..." rang in my ears and stuck with me. So much unacknowledged loss was present, as the people were trying to only get back to where they were.

And that's where my learning is coming in. Why do we seem to seek for the person with the mental illness to get back to "where they were"? We, as human beings, change and grow and fall back and adapt and shut down and everything so much through our lives. Why is it the person with the mental illness that is supposedly never supposed to do this? I had a family with a 40 year old son that first experienced psychosis in his early 20s. They kept talking about what he was like before and how all they wanted is for him to get back to where he was. I understood where they were coming from, but it didn't make sense on some level. It's not that their expectations were too was that they were skewed in some way.

There really doesn't seem to be a lot of literature on the subject, which is very unfortunate. I would really like to learn more. I have found a few journal articles and this one book, Grieving Mental Illness: A Guide for Patients and Their Caregivers, but that's about it. Most of the articles related to this are about how grief from the loss of a loved one through death can contribute to mental illness. I hope that in my further studies, I'll be able to investigate this a little bit more, as it's really an interest to me.

Any thoughts? I'd love to hear people's experiences on this subject


Awake and Dreaming said...

I've definitely seen families grieve over the mental illness of a loved one. I know my family has. Because it's hard, and it hurts. It's interesting to think about, something I've considered, and will continue to consider.

antiSWer said...

What I am fascinated by is that it's a loss of something that's both difficult to define and also not socially acceptable to define. You're not really grieving a mental illness, you're grieving the loss of what the person was before they got the mental well as what life was like before that time! There's so many different components to what the grief could be...

Krista Long said...

I have done a lot of work and research around the topic of "Chronic Sorrow". It is usually examined in regards to families with special needs children, but I can see it in mental illness as well. It is definitely a loss, even if it may only be a perceived loss.
Chronic Sorrow: A set of pervasive, profound, continuing, and recurring grief responses resulting from a significant loss or absence of crucial aspects of oneself (self-loss) or another living person (other-loss) to whom there is a deep attachment. The way in which the loss is perceived determines the existence of chronic sorrow. The essence of chronic sorrow is a painful discrepancy between what is perceived as reality and what continues to be dream of. The loss is ongoing since the source of the loss continues to be present. The loss is a living loss (Roos, 2002 p 26).
The book is: Roos, S. (2002). Chronic sorrow: A living loss. New York: Brunner-Routledge.
(Can you tell I have written a paper or two on the subject?)

Possibility Thinker said...

Great post, very insightful. I had a family member who was hospitalized. They weren't sure what the diagnosis was but she had changed a lot. Sort of "listless." Once creative and vibrant, now sort of just "there."

The doctors told our family she wouldn't ever amount to much again since people with bipolar and/or schizophrenia or whatever they thought she had usually didn't.

I think they did that to brace us but the truth is, she is fine now and gets regular therapy and drugs and you would never have known she had a mental illness.

I think people grieve because they don't know how to deal with change. Our muscles get older and atrophy, why not our minds? We should love and support through the 5150's and even the diagnoses of mental disorder. Just my 2 cents.

Vic said...

When, however, does that not happen? When do we not hear that in a 'normal' person's life?

"After that accident she changed..."
"After the divorce her outlook..."
"Once she moved..."
"She took that death really hard..."

I think we tend to be a very cause-effect society. That's why we stress causation vs. correlation.

why/how is a person behaving a certain way? what caused it, what is effecting it? I've heard many times, what may or may not be truth, that family members get accustomed to people being a certain way, and their change makes them uncomfortable.

Sometimes, I think, the change, or precipitous of change. tends to make people fearful - if something could change "them" what could change me? and would it be for the better?

Tanya said...

Yup. I think it's safe to say people grieve over their drug addicted son or daughter as well. "Before the drugs, he was...."

As you so wisely noted, grief is all around us in enumerable manifestations.

Anonymous said...

What I often talk to patient and families about in the hospital is finding "a new normal." That is part of the grieving process, I think. They will still remember how their loved one was "before" and then they will see how things have changed. Sometimes, there's a "new normal."

antiSWer said...

I think it can be applied in so many different areas. I think it's ignored in a lot of these.

A "new normal"...I like that term.

Anonymous said...

I've written a few posts on some language analysis I do for a psychiatrist specializing in dignity conserving care. I'll paste the links below and I also highly endorse the book Final Exam: A Surgeon's Reflections on Mortality by Dr Pauline Chen

Here is a URL and you can poke around for more if you're interested:

Empty said...

The simple answer to your question as to why people focus on how a person was before is that mental illness is a form of disease that is usually debilitating to the person or causing them pain. It's hard to see our loved ones in pain.

However, the point you made about people always growing and mental illness is a form of change is valuable. Which leads to the question of the positive way people may adjust to their illness.

Anonymous said...

Wow I love this post and I actually have a two cents to throw in. I suppose it goes without saying that there are so many reasons why one might grieve for a person with mental illness and I think one of the main sources of the grief is for the loss of what might have been, or rather yet what we thought was to be. This is a very hard thing to let go of especially when one is looking at their child. You've had these expectations of their future based on how you knew them to be as a child and letting go of that is a very real loss.

LovEternal said...

My mother has a chronic mental illness that has impacted her ability to work and be an "active" mother over the years. I grew up with this so it was normal to expect that mom has "good days and bad days". I picked up the slack when I could. Now that I am an adult, mental illness has affected me personally for the past 12 years or more. I always expected that I would return to "normal" just because of financial reasons. I need to make a living. But, now that I am into mindfulness I have learned to accept where I am as opposed to where I had been. It is a struggle.

antiSWer said...

It is through acceptance that we can move forward. I worked with a lot of people whose preconceptions of what reality was now (with respect to their sick loved ones) and would forever be shaped their existence. Helping them accept the reality of what REALLY is helped them move forward.

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