advocacy

No One Brings You Chicken Soup When You’re Depressed

There are approximately 1 in 4 people living with a mental illness worldwide. Think of that. It’s a huge number. And yet, I bet you’d have trouble naming more than one person in your life who has been diagnosed with a mental health disorder.

In 2015, discussions about mental health are still often done in whispers behind closed doors. “Don’t let them hear you” is something I’ve been told before. I’ve been hushed. I’ve been told the topic is inappropriate. I’ve been threatened to be “outed” about my history of mental illness (of which I speak and write about a lot, so I’m not sure what their goal was).

I’ve been told a lot of things about mental illness in my life. That it’s a choice. That I can control it. That kids and teens can’t have it. That I don’t look like someone with it. More recently, I was laughed at when I told someone I had ADHD, they then followed up with telling me only teenagers “get it” (it’s a communicable disease apparently), and women can’t ever have it.  I’ve been called oversensitive, selfish, ridiculous, and so on. Other loved ones with mental illness have been called dramatic, bored, and disruptive. (Thankfully, my family has always been nothing short of supportive.)

I feel strongly the reason so many suffer, often without treatment, is because we don’t talk about it. I don’t tell you what therapies or medications have worked for me. You don’t share what coping skills you can’t live without. We don’t open our arms and say, “I accept you.”

No one brings you chicken soup when you’re depressed. I’ve been part of community groups and have seen others’ involvement in their church groups. There is usually a call for meals or crocheting blankets or visits for those who are ill. Cancer comes up a lot, and other chronic physical illnesses, as well as when someone has had a baby. I’ve never heard a request made to bring meals to someone who just left rehab. Or to check in on someone who just changed their prescription. How welcome a small reminder of love it might be to receive a handmade, cozy blanket while laying in the ER at 3 A.M. as your world collapses beneath you. (Robot Hugs has created several perfect comics addressing much of this.)

Some people will laugh at the idea of people reaching out in these scenarios. Well of course, who would share that they just left rehab or that they take psychiatric drugs?

That is the problem. Why don’t we? Why is there still stigma? Why do we fear losing our jobs, freaking out our partners, having our kids taken from us? We stay silent. We know that if we say “I have anxiety and OCD,” “I am bipolar,” etc. that instantly people will assume to know everything about us. We suddenly become unreliable, unstable, and even unlikable.

How do we change this? Well, the first step is for people like me who can come out and speak about their mental illness, to do just that. I’ve been talking about it for years, and in the fields I work in, it’s not really an issue. So I can speak out, without fear of being blacklisted. The more each of us speak out, we can change minds. People will see real, actual people with mental illness, and not the often cringe-worthy portrayals of us on television and in movies.

From there, I hope others with mental illness can step forward, without worry of reprisals. Collectively, we can be so powerful that we can change how society treats us, how the media reports on us, how caretakers and hospitals deal with us, and how insurance companies value (or often harm) our health.

This week, John Oliver brilliantly observed all that is wrong with our system and how we treat those with mental illness in this country. You don’t have insurance coverage. Or the coverage you have only covers 30% of care that costs $1000 per day. Or your therapist doesn’t accept any insurance. Or you have coverage, but they’ll only allow you to stay inpatient for 48 hours. The hurdles someone with mental illness has to go through to have their care and medication covered are inhumane. We have to fix that.

We also need to get help to people before they are suicidal or living on the streets or addicted to substances. We wait until it is a dire emergency to take our heads out of the sand and say, “Oh! I guess you need a psych eval!” What other disease or disorder in the world is treated like that? Let’s wait until cancer has nearly killed you before looking at chemo as an option. Let’s hold off until your arteries are clogged enough that you may have a heart attack at any moment before we intervene. Let’s wait until your lung functioning is at 10% before we treat your asthma.

With the number of suicides happening each year, how can you say we are not in crisis? We desperately need to change this conversation.

So, what you can you, a family member, friend, or professional do to help? Just that, ask how you can help the person. Send them a text message. Mail them a card. Bring them chicken soup, or McDonald’s, or whatever else you know they’d like. Send them a care package. Listen to them.

Be present. Don’t pull back because you are scared or confused or you don’t know what to say. It is perfectly fine to tell us you wish you knew what to say. We get it. Just be here. I know for me, a lot of times, I don’t want you talk. I don’t even want to talk. My head gets so distorted and full of thoughts, I just want to watch a show and forget it all. Or play a video game and be someone else for awhile.

Don’t look at me like I’m weak. I’m not. I’m tougher than most people, don’t ever let mental illness make you think someone is not strong as hell. Respect all the work I put into addressing my mental health needs.

Don’t belittle people with mental illness. From dealing with insurance companies to showing up for therapy appointments to dealing with nasty side effects of medication to trying to care for yourself each day, getting through life with mental illness usually requires a ton of effort. Don’t ever disparage those efforts. You may not ever understand why, when your friend is having a rough spell, they cannot cook for themselves or don’t brush their hair. You don’t have to understand, just know that your friend would be doing those things if it were easy. And know that they probably shame themselves enough for not being able to do that stuff, so you can hold your judgment at the door.

Bring me chicken soup, ask if I want a hug, and build me a blanket fort. When I feel stronger, write letters, make phone calls, and shout into the megaphone along with me. Be there for the people in your life. Fight alongside them for better care and greater access to that care. Let your friends, family, and co-workers/employees know that you support and accept them. Open up a dialogue today.

What if we treated physical illness like we treat mental illness? Food for thought, from Robot Hugs.

What if we treated physical illness like we treat mental illness? Food for thought, from Robot Hugs.

#MicroblogMondays: I Love New York Except…

NYCnov14 (2)I love New York except when the rent is too damn high and continues to soar and there’s no way I’ll ever be able to afford to live there.

I love New York except when the MTA continues to raise its fares and traveling across a borough with my kids becomes too expensive.

I love New York except when the practices of law enforcement are racist and biased, their actions continue to do harm to those they are being paid to protect, and the NYPD has yet to build any trust within the communities they are supposed to be serving.

I love New York except when I’m tired and cold and sore and stressed out and have a million worries on my mind (like Saturday when I took this picture).

New York, I love you, but…


Thanks, as always, to Stirrup Queens for always giving me a reason to post something on Mondays!

#MicroblogMondays – Reaching for the Bottle

glitternailsI was near tears on Saturday night.

I was tired of facing disappointment yet again, and the stress of life was bringing me down.

I wanted to drown my sorrows in booze. Oh, the temptation of forgetting everything, even if only for a few moments…

I weighed my options and reached for a bottle. Thankfully, it was this bottle, of fantastic, glittery nail polish.

I learned it’s impossible to be sad when it looks like Studio 54 exploded onto your fingertips.

The FDA Hearing and The Judge Rotenberg Center: What You Should Know

[CN: abuse, ableism, torture]

Photo: Canton Community TV

Imagine being electro-shocked for getting out of your seat without asking permission. Imagine that the reason you were being shocked was simply because you may become aggressive, and all of it was legal. Imagine wearing the electrodes on your skin 24-7, knowing you could be shocked at any moment. Imagine witnessing your peers be shocked as well. Imagine that all of this is ignored because the public barely, if at all, acknowledges your existence.

This isn’t fiction, nor is it in some far away place or just a shameful part of history. This is happening in America, in 2014. The Judge Rotenberg Center (JRC) uses “aversives” as part of their treatment program. Aversives can vary, but some of the aversives used at JRC include electric shock (which is not ECT), mechanical restraints, and food deprivation.  Aversives are used for behaviors the staff deem “inappropriate” or “disruptive,” ranging from blowing bubbles with saliva to not maintaining a neat appearance. In addition to electro shocks, JRC practices isolation and physical restraints as per multiple reports (including former employees and members of the New York State Education Department review team). This is a difficult read (major TW for severe abuse, death), but necessary if you want to truly grasp the horror that goes on at the Judge Rotenberg Center.

In 2011, the Massachusetts Department of Developmental Services (DDS) ruled that licensed facilities can no longer use “behavioral interventions” such as “electric shock, long-term treatment, or aversives that post risk for psychological harm” on new admissions. Essentially the treatment program JRC has long proclaimed as a success is now deemed unfit. The problem is, this ruling is only for new admissions. Any students previously admitted and receiving aversives as part of their program, however harmful, are still being shocked. This is troubling. Most people are unaware that there is no federal law banning the use of aversives, even shock devices, even on children, even in schools, even on people with disabilities. State laws vary and it can be illegal to use such aversives in some, but no federal law yet exists to protect our citizens against a human rights violation. There is a lot of work to be done here. (more…)

Autism Speaks Never Spoke For Us

This is the first in a series of four posts on autism this month.

moneypuzzle2April. This used to be the month I despised most. It’s the time of year when the word “autism” is plastered on everything from pretzels to Toys”R”Us posters. (I still wonder where that money goes exactly…) Well-meaning friends and family would tell me how they made a donation to Autism Speaks or purchased an item which supported the organization. I’d cringe. They thought they were helping. They saw nothing wrong with the puzzle pieces, the demand for a cure, and felt Autism Speaks was helping people like my daughter. I wrote a lot about why I could not support Autism Speaks and frequently tried to explain it to those around me. Sometimes, it would get so tiring and the month of April was always the worst. I’d breathe a sigh of relief when May 1st came around.

Autism Speaks repeatedly presented the public with a desperate and depressing message. (more…)

The Enormous Elephant In Society’s Living Room

[CN: sexual assault, rape culture]

I went on to Tumblr for a little break, and a bit of inspiration found me. I ended up writing a blog post there, but I wanted to share it here as well. Wil Wheaton posted a story by Stacey May Fowles, entitled What can’t be published from The National Post. Ms. Fowles writes:

The week the Bloor and Christie suspect was revealed by the police, a male friend walked me home through the neighbourhood where the attacks took place. It was late on a Friday night, and he insisted on accompanying me after sharing dinner and ice cream, noting the sheer lunacy of me doing it myself after the constant reports, tweets, blog posts, Take Back The Night and self-defence course invitations.

While we were walking past Bloor and Grace, where one of the assaults reportedly occurred, two extremely drunk boys, estimated to be in their teens, staggered towards us and slurred their directions. We obliged them, and watched as they stumbled on their way, towards the subway.

In that moment, I realized they were enjoying a freedom I had never had and could never have. Blind drunk and exposed in the middle of the night, they wandered gleefully, happily and safely, conversing with strangers and inviting attention. The very things the written words that week had told me I wasn’t allowed to do.

The entire article stuck a nerve; I relate to it in so many ways. From being a woman who is constantly told how to protect myself from men to someone who has just started speaking out and writing candidly about my own sexual assault, Fowles’ words spoke to me. I hope you will read the entire article, these are the stories that need to be told and heard. Here is my own response.

We’ve far to go to bring society to put the blame on the rapists, and teach men that they should not rape. I hope in my lifetime that mentality replaces the past, and unfortunately still current, views of teaching girls to be careful & not get raped. Today’s standard of how we treat rape only perpetuates the idea that victims are somehow responsible. What a tremendous burden for a victim to carry, in addition to the myriad of emotions experienced and injuries endured during and after a rape.

Why more men aren’t outraged by this is beyond me. If women were constantly portrayed as unable to control ourselves, and that men had to constantly be on the look-out because I or my friends may attack them, I’d be disgusted. I would never want the rest of the world to see me in that way, as an animal. I can still remember from adolescence learning how if a guy had an erection, it had to be taken care of. He’d end up in miserable pain, even possibly have medical problems if he didn’t ejaculate. Yes, that myth was still alive and well not too long ago, and I assume still is in the halls of middle and high schools. As a teen, I was scared to even kiss a boy for this reason; the pressure of knowing I’d have to touch him, no matter what because that’s just how it goes, was too intense for me. As an adult, I’ve had experiences where grown men still claimed this same rule, that if they were aroused, it was my duty to “help” them out. There’s few things more pathetic than a grown man sitting there telling you how painful it is or begging you to just jerk him off because “look what you did to me” as he points to the bulge in his pants. And men are not entirely to blame here. These ideas were taught, either directly or indirectly, by society.

I think a major reason why the disconnect exists is because when it comes to sexual assault, we don’t talk about it enough and there is far too much shame (on the victim/survivor’s part) involved. I’ve been told before to not speak about my rape, even warned that others may use it to harass me. So not only does society tell me I’m somehow at fault for getting assaulted in the first place, but now I must hush up or else others will try to inflict additional harm? Rape is the enormous elephant in society’s living room. In order for everyone to understand exactly what rape is and the legacy it leaves, we need to continue to speak out, and speak loudly. Women, I beg of you, tell your stories; from catcalls to sexual assaults, get vocal and be heard. It is never your fault. We must keep doing so until this shift occurs and men are taught to be held accountable for all of their actions.