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A Journey With You

Tag Archives: support

“…talking Away. I Don’t Know What I’m to say. I’ll say it Anyway” Lyrics from a-ha

08 Monday Oct 2018

Posted by A Journey With You in bipolar, caregivers, hope, mental illness, relationships, schizophrenia, stigma, Uncategorized

≈ 4 Comments

Tags

bipolar, brain disease, communication, community, groups, mental health, mentally ill, schizophrenia], social media, support, talking, wellness, women

I’ve spent much more time out in public lately, and I have noticed that I enjoy talking to strangers. I usually start up conversations with servers in restaurants, and with cashiers in coffee shops and grocery stores. I frequently say something self-deprecating or humorous in another way, to start up a little back and forth.

Yesterday, my husband and I went to four museums by our house, and we talked to people viewing art, people working the doors, and as usual, I complimented a few women on their outfits as we passed them walking through the park.

Years ago, I noticed that my dad would talk to everyone he encountered and I found it annoying. Now, I’m just like him. I like talking to people. I especially like it when we share a laugh, a few smiles, or impart some information to each other like a favorite place to shop for sales, etc.

These interactions with people are like little fuel charges in my day. They don’t take energy; they give energy. Unlike how I feel about most social media. So many of the writers I am friends frequently encourage me (and others) to find “your community” “seek out your community” “rely on your community” “build your community,” but the writing communities and communities for women are less than supportive.

Some of the women writing communities I belong to have a call out culture of shame and humiliation if someone makes a mistake regarding a social justice issue. I don’t know how all of us are supposed to learn the ever-changing language, norms, preferences, etc. of different groups if we don’t learn it from somewhere and that learning can mean making mistakes.

It has to be okay to make mistakes without calling the person’s intelligence, character, intentions, etc. into question. I don’t know everything about the LGBTQA community or racism, and I am willing to bet that the people who try to make others look bad so they can look virtuous and knowledgeable and “above it all” don’t know everything about the mental health community. For instance, I bet they don’t know what those of us with a mental illness find offensive, degrading, stigmatizing, etc. Yet, I don’t try to shame people who make mistakes.

Other communities of women are supportive of you only if you have social capital. In other words, if you are a well-known writer, you will get hundreds, possibly thousands, of likes on anything you post, no matter how mundane. But if you are not well known, or don’t have contacts, or something that others feel they want to be a part of you might get one like or two likes and those come mostly from people who know you in real life.

So these communities that we are often told to seek out, join in, get support from are often not welcoming or supportive at all. I have found the same to be true of the mental health community. You would think that I would be a natural fit in the communities based on mental health. I write about severe mental illness; I have lived experience, I put myself and my story out there as an activist.

In the mental health communities, I find that the same hierarchies exist regarding social capital. I also find that in many of the communities, it seems like it is just people looking for attention. They don’t want to start real conversations or help each other to move up, move beyond, challenge, live better, etc. Frequently it is about someone posting a picture (I see this at least twice a day) with the caption, “Everyone says, I am ugly, do you think I am ugly?” Of course, it will be a photo of a young woman in her early twenties that is attractive. I can’t say that no one has ever called these young people ugly, but I can say that this happens so frequently it just looks like a way to get attention and hear people say positive things. Which, I have to admit is sad and possibly does belong in a mental health group. I don’t know.

But for whatever reason, this “find your community” mantra that so many people suggest, espouse, and recommend to others trying to find support, friendship, camaraderie, etc. doesn’t often work, and people are frequently left feeling more socially isolated and alone than they did before. I know I do. I belong to a dozen groups online and don’t feel real support from any of them.

I do, however, feel real happiness from interacting with people in real life. Of course, I love having lunch with friends; I think I am going to love my new part-time job (working with the public) and I like talking to strangers even if I only encounter them for a few short minutes.

If your social media life leaves you feeling hollow, lost, lonely and isolated, know that you are not alone. I feel that way almost every day when I try to reach out. It doesn’t surprise me that anxiety disorders have skyrocketed in this country. When you judge your writing, your creativity, your problems or whatever you post by the number of likes you receive (support you receive) or when people try to shame you for not knowing the latest changes in the world of social justice, you can end up feeling depressed and isolated, misunderstood or not seen or heard.

If that happens to you, try going to the grocery store and ask the cashier what the best kind of ice cream is. They may not know, but they may give you a recommendation that makes binge-watching old episodes of Golden Girls or MASH a Saturday night celebration. In any case, you will have started a conversation and those small conversations, the little ones throughout the day can revive you, lift you, carry you through the downfalls of what people thought would connect the world and open us up to each other in life-changing ways. The experiment of social media has failed to bring us together, people are more lonely and isolated and divided than ever. I’m relying more heavily on the old-fashioned version of social media – talking, and I’ve already discovered two new kinds of ice cream, and that is just the beginning of the benefits.

How We Support Various Illnesses (Hint: not equally)

22 Friday Dec 2017

Posted by A Journey With You in caregivers, mental illness, schizophrenia, Uncategorized

≈ 7 Comments

Tags

breast cancer, cancer, charities, mental health, mental illness, mentally ill, public awareness, schizophrenia], support, susan b komen, wellness

For most of 2017, I had to struggle to accept the fact that I might have breast cancer. (I have one final test in February, but everything is finally looking good and that I mostly like don’t have it). All the anxiously waiting for results during that time forced me to look at the treatments for breast cancer and prepare myself for the worst. I read about lumpectomies, chemo., radiation, and various other therapies. I know women who have gone through all of these things. I read the stories of writers. I was nervous. I was anxious. I was scared, but one thing I knew for certain was that some things would be much easier with cancer than schizophrenia.

If I receive the diagnosis of breast cancer, I can expect food from friends, and our church family. I can expect that people will send cards and flowers, and call me, and contact me regularly on social media. Not only that, I can expect to see millions of people buy pink ribbons, wear t-shirts, post a pink ribbon on social media, walk in 5-K races and write checks to the Susan B Komen Foundation. (I discovered this charity is not always popular among survivors because of the reportedly high salaries of top executives). Nonetheless, I would see people from everywhere in the country rally around the illness I was facing. I would also have many women to talk to who have been through it; I know at least a dozen.

Schizophrenia is a lonely disease. There is a Schizophrenia Awareness day, but hardly anyone mentions it (the past one, I think I saw two or three references to it on social media). It doesn’t get put on Facebook’s radar like cancer. At certain times a year, you can choose a pink ribbon banner for your profile. On those days, Facebook is awash in pink. There are also games women play on Facebook to raise cancer awareness. They secretly send each other messages and ask what color of bra the recipient of the message is wearing and ask her to post that color, without explanation as a status update (there are variations of this game). (Activists have criticized these games, created to raise awareness, for allowing people to believe they are doing something to wipe out or educate about cancer when in reality, writing a check supporting research or education is far more productive and helpful).

There are hundreds of ways to show support for breast cancer (not that it makes it any less terrifying or the treatments any easier), but it does do one thing, it makes a person feel important – the struggle is real and the struggle matters to millions of people.

With schizophrenia, there is the illness and all that entails. There is the toll that that illness takes on the person who has it, and on their loved ones, and then added or piled on top of that is the struggle to be seen or heard, or taken seriously or cared for – none of those things are a given. Families often have to fight for their loved ones, and it may very well be that they feel as if they are the only ones fighting.

I know that when I was psychotic the last time (for six whole months), my husband was on his own. He had to work his way through a maze of illness by himself without any support. I have read many family stories of people desperately trying to get their loved one treatment but running into problems and roadblocks time and time again. There are few, if any, safety nets. There are no public campaigns that get wide spread attention and support.

We are not a huge group, but our numbers are significant. Those with schizophrenia are some of the most forgotten and vulnerable in our society. Having this illness can feel like you are floating in a small rubber boat in a vast ocean.

If you can raise awareness, if you can send a friend or family a card, or make a phone call, please do it. The isolation, grief, and loneliness can be overwhelming, and your concern and compassion can be the fuel that keeps people doing all they can to survive, or help a loved one do so.

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