Stigma

Many months have passed since the last blog post. I usually try to find something to say at least once a month, but May, June, and July passed in silence.

What is there to say on a public platform when it’s all intensely personal?

There are certain things that are acceptable to talk about as a potential role model or a voice that could carry to several audiences. I try to be mindful of that, but being disingenuous about my everyday experience is more painful than being silent.

At the same time, staying silent is disingenuous. Silencing an experience lived every day and evident in my writing does no service to a common reality shared by countless other people. And it says something ugly about how stigma affects us to such a degree–that speaking as who we are and how we live will discredit our voices, so we do our best to make them small. Not our own. Normal, unidentifiable.

Safe.

But here is reality, in the voice I use every day: for the past three months, my doctor and I have been struggling to find the right mix of medications for a chronic illness I have lived with most of my life.

What is it? No two doctors can agree on an exact diagnosis. Many have waved away potential diagnoses as insurance companies would deny coverage for certain medications over others.

“Safer to keep it limited to bipolar,” a hospital doctor told me.

And that’s the only label I’ve consistently carried. A slew of others followed me out of adolescence–post traumatic stress disorder, panic disorder with agoraphobia, panic disorder without agoraphobia. Dissociative disorder not otherwise specified. The more I dug, the more confusing it got. The more I tried to figure out what I was, the less I knew. I couldn’t identify myself by symptoms, and I didn’t have the language or the knowledge to understand where I was injured or why. No one else could seem to assemble the pieces.

I had to hunt for myself.

I knew one word that made sense–trauma. As an undergrad, I made it my study of choice. Whenever possible, I would orient a paper around some facet of trauma I hadn’t yet researched, and each time, I discovered another tiny piece. Some clue of what had happened, what had made me the way I was.

By the time I was 23, I had the outlines of a mosaic that was finally starting to make sense. It didn’t matter that I couldn’t find an identity in any particular label; I didn’t have one. The mosaic was too big, too broken, and no amount of labeling would put it back together again. I was the one who had to fit each piece back where it belonged, who had to glue each piece back together again.

It took five years, a loss of $8000 dollars when I initially dropped out of college, far more in therapy and hospitalizations, and countless hours of hard work. Two years of scribbling my daily schedule on my mirror, binders, and hands; three years to learn how to shake off hallucinations I knew weren’t really there. From 18 to 21, my life was a sometimes hellish, sometimes surreal landscape I could never be completely certain of.

It’s troubling to wake up in places and not remember how you got there, or try to figure out how to get home when you’re not sure what year it is. Time was fluid. Memories were traps. Certain words, certain situations were like loaded bombs. And I was furious all the time–angry at myself because I couldn’t get my crap together, angry at my family because of my mother’s illness, angry at my mother because she couldn’t get well. It was a defining characteristic that imploded spectacularly in the spring of 2007 and landed me in the hospital with little recall of how I got there.

To date, the period between February of 2007 and roughly June the same year is still a soupy mire. Things happened during that span of time that I’ve only recently processed, and took years to finally accept.

The facts: my maternal grandfather, one of the people I love most, was hospitalized in February of 2007. It was unclear how long he would be in the hospital, or whether he would get better; his condition was grave. My mother left for Pennsylvania to be with him, and as I had an 18-hour credit load, I stayed.

Somehow I managed to pass three of those classes. The rest had to be withdrawn.

As my Papa’s condition deteriorated over the following months, mine did, too. I’d never dealt with death very well, and this time, it was catastrophic. I was alone, except for friends, and while they slowly began to realize something was very wrong with my behavior, they didn’t know what to do about it.

Three days before my grandfather died, my then-boyfriend, now husband managed to call my therapist and my doctor and took me to the hospital. I only know that it was three days before Papa’s death because that was the day my sister picked me up and told me we were flying up for the funeral.

Very oddly, I managed to keep my head. Long enough to come home and leave home, too raw to stay there while I recovered. Jeremy’s family took me in while I sorted my head, and that fall, I moved into a house with him and our mutual friends. They helped me move my things over bit by bit, and by the spring of 2008, my therapist determined I was ready for EMDR. I could finally piece together that giant mosaic in my head.

What I found was ugly but necessary for me to understand that one instance of trauma hadn’t broken me up. I wasn’t a flat mosaic. I was made up out of one fractured layer after another, each descending layer more broken than the one that came before. And when I landed at what we determined was the initial breaking point, it was one I’d been aware of all along.

Death.

I lost a close friend as a child. At 22, I was facing the probable loss of my own mother. I’d just lost my grandfather, and stood by my boyfriend as his stepfather died. It made me raw in ways I couldn’t express, honest to the point of pain. And while I resolved that particular truth, it isn’t one I can ever escape.

I don’t try to, anymore. I stay wary of this thing haunting me, try to understand what it wants. What it’s communicating. Most often fear, irrational, illogical, but sometimes a need for distance, too. Dissociation is a different experience now than it was in my early twenties, but I’m better these days at finding my way out.

What I live with is a creature that constantly transforms. It’s a guessing game, trying to predict its patterns, what symptoms it will decide on next. I don’t know what to call it other than an adversary. Certainly, it handicaps me to an extent. It’s only recently that I’ve been able to find work I can do from home. I’m not as resilient as I used to be, and it’s harder to pass myself off as “normal.” The cracks show eventually, and someone new will see me at my most vulnerable. Staying ahead of myself requires wise, trustworthy companions who understand what I’m fighting against, what will do harm, and what will help.

I can’t hide that. It’s evident in who I am. It’s evident in every word I write.

But it doesn’t make me any less brave for fighting against it over twenty years and struggling to understand what it is. The search never stops. Tracking mood and behavior patterns is a fluctuating process that can’t be monitored by just myself. If it weren’t for supportive family and friends, access to health care, and the knowledge that I am not the only one living with a chronic mental illness, well, my prognosis wouldn’t be good. It’s hideous for people without those advantages.

When I think of what would have happened to me if I hadn’t had those things, I know I wouldn’t be here. I’m lucky to have the privileges of a family with insurance and the money to help treat my illness and support me day to day. I’m lucky to have friends who truly care about me. There are countless people out there with none of those things, and mental healthcare in the United States is not improving. Here in South Carolina, it’s one of the areas that faces more and more budget cuts every year. People who can’t afford care don’t get the help or resources they need. A lot of them are veterans, a lot of them are marginalized, and so many are homeless it’s heartbreaking. There are millions of people living with debilitating mental illness who are misunderstood and stigmatized. When you also live at the intersections of poverty, racism, and gender discrimination as well as being queer–well, things get a lot harder. It can be nearly impossible to provide for yourself, let alone secure disability. It’s one of the reasons suicide is the 12th leading cause of death in the United States. Add in those factors, and for the people living with mental illness, getting better can look very grim.

People blame shootings on failings in the mental health sector, but what I know is that I can count more mentally ill people who have died because police hadn’t received crisis intervention training than mentally ill people willing and capable of killing innocent people (for the record: zero). These were people I knew on a professional basis who died because they were misunderstood.

Maybe that’s a little more important than keeping quiet and trying to pass as normal.

So here is what I’ve been doing for the last three months: surviving. Trying, despite months of the wrong medications, to find the latch to the other side. I know it’s there. If there is anything I have learned about living with a mental illness that won’t go away, it’s the possibility that things can change.

I’ve learned that mothers can survive. My eighteen year old self would laugh if I told her that today, but it’s true.

I know that mosaics–no matter how large or multidimensional–can be put back together, even if they cannot be made whole. And they can break again, and again, but but they will always unveil some new, highly important truth.

Holding to the idea that things will stay the same is as useless as thinking things will never change. A chronic illness means you will have times of wellness, and times of ill health. The best you can do is try to be prepared and advocate for yourself like you would for the person you love most.

There is no picking yourself up by your bootstraps, or just getting over it. And there is no such thing as “permanently damaged.”

We aren’t our illnesses. They are a part of how we live, but they aren’t us. We have names, and identities, and things we love. We have favorite memories and favorite foods, places and experiences who define us more than a terrible hour or a wretched year.

Good health to you, reader. Maybe eventually we’ll see a world with less stigma and better modes of treatment. More kindness for the people around us, more compassion where understanding fails.

Things can always change.

That’s my hope.

3 thoughts on “Stigma

Add yours

  1. “We aren’t our illnesses. They are a part of how we live, but they aren’t us.”

    So very well said, and so important to everyone with any chronic condition to realize, whether the condition is physical or mental. As someone struggling with chronic pain, I often have to say “no” to things I want to say “yes” to, and I constantly have to remind myself of this: there’s more to me than my condition. Thanks for putting it so succinctly and so encouragingly.

    Like

    1. It was a tough lesson to learn. It’s tempting to use the energy you’ll need tomorrow on the things you want to do today. It’s taken a long time to learn how to respect what I can do instead of pushing it. I wish you ease with your condition. Chronic illnesses of any kind require a lot of patience and bravery.

      Liked by 1 person

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