Hidden Battles

If there's one solid fact we can take away from the current pandemic, it's that it has exposed the gaping holes in our society; the populations for which our country has fallen desperately short. The unemployed or underemployed. Individuals of color. The poor. The almost poor. The not quite poor but within one disaster from being poor.The disabled. Then there are the systems we are constantly assured are here to help us. The banking industry. Government programs. The health insurance industry. I could go on and on.

But there's something I've been trying to find more information on and have really struggled. Maybe you can help. Google "how to cope with COVID-19 when you already have a mental illness." Or try various iterations of that sentence. I'll wait.

A couple of semi-helpful articles appear, it's true. But a lot of what comes up are articles like, "How to manage your mental health during COVID-19," which are aimed at the population as a whole. These are helpful and well-intentioned articles advising taking a walk every day, staying connected on social media, mantaining a routine, and talking to loved ones on the phone. Some recommend breathing or meditation exercises that can help you become centered and peaceful. They're all good suggestions. There's just one tiny problem.

What if you were hanging on by a thread before COVID-19 turned the world upside down?

The Already Mentally-Ill

According to the National Alliance on Mental Illness, approximately 1 in 5 (19.1%) Americans suffer from mental illness of some sort. Mental illness is a broad term, of course. It can range from depression to dissociative disorders to schizophrenia to a variety of illnesses in between, all of which range in severity and ability to be treated. Each person suffering from mental illness is different. This, in my opinion, is exactly why we've been left behind and continue to be of low concern during the COVID-19 pandemic. Identifying us as one group is pretty impossible. We're shoehorned in with other, more statistically accountable groups. Plus, a lot of us are really good at hiding our suffering.

"Everyone is struggling," has become our national mantra. And it's true. But the struggle and severity differ strongly from person to person. Just as we acknowledge that our country and world are diverse in identity, we must accept that we are diverse in how this virus is affecting each of us.

Outstanding bloggers like this one have pointed out how disabled persons felt gut-punched by seeing workplaces suddenly make adaptations and accommodations disabled people have been asking for for years. Where, I ask, is the understanding for people who suffer mental illness? Where is the widespread acknowledgement of how this crisis is full of triggers, worst-case scenarios, and feelings of isolation, which already plague those fighting mental illness?

We are seeing offers of how to cope for people struggling with this crisis on a broad spectrum. We are seeing the ideas for those who are confronting these feelings of anxiety and depression for the first time. Where is the support for those who were already on the verge of letting go?

A Short History Lesson

Mental health coverage and treatment in this country are constantly going through radical changes. Sixty years ago, a lobotomy was thought to be successful for severe cases. Up until 1960 insulin shock therapy was used frequently. (As a Type I diabetic, I can tell you that this sounds like an absolute nightmare). It was replaced by the only slightly less horrific electroconvulsive therapy, still in use to this day. The DSM-IV, considered a bible of sorts in diagnosing and understanding mental illnesses in recent decades, was used until 2013, when it was replaced with the slightly better but still problematic DSM-V. This revised tome focused on symptoms and diagnoses, rather than causes, a common thread in Western medicine. Neglecting to get to the root of many mental health issues led to quick and unfounded diagnoses and medications with debilitating side-effects. The DSM-IV also categorized certain things as disorders that are not, such as non-conforming gender identity which was only removed as a mental health disorder seven years ago.

Today we balance our mental health between psychiatrists (doctors who prescribe medications) and psychologists (sometimes doctors and sometimes not, who assist with talk therapy). There are a lot of problems with this model. For one thing, getting in to see someone through your health plan can have a waiting period of months, which is not exactly helpful when you're suicidal, harming yourself, abusing drugs, having hallucinations, or other issues that come from uncontrolled mental illness. This has led to the opening of many private clinics. Some accept insurance, some don't. If they don't, you can expect to pay $150-$300 for a session with a therapist. Then there's the challenge of finding a therapist that works for you, which is almost as bad as dating.

Furthermore, psychiatrists have been known to fling drugs at the problem with aplomb. Most of these drugs have side effects including but not limited to:

Drowsiness, restlessness, muscle spasms, tremor, dry mouth, blurred vision, involuntary movements most often affecting the mouth, lips and tongue, impaired coordination, memory impairment, dizziness, nausea, headache, nervousness, dysphoria, diarrhea, sexual dysfunction, insomnia, fatigue, loss of appetite, sleep problems, mood swings, constipation, and weight gain.

SIGN ME UP!*

Those of us who are mentally ill are subjected to trying out the right cocktail of medications to help us function or at least get out of bed. Many of these medications also take weeks to reach their full capacity. Which means that if you want to work a job that has zero accomodations or understanding of your condition(s), or where you have immense responsibility and can't take time off, but you need time to wait out the very real side effects, well...good f**cking luck.

I have been on medications that made me lose 20 pounds, gain 30 pounds, lose track of where I am in a city I've lived in for over fifteen years, forget important personal information, made me so tired I couldn't keep my eyes open, gotten me so wired I didn't sleep for 48 hours, caused extreme pain in my head and neck, completely robbed me of any and all interest in sex, and, a current one that's really cool that has come and gone my entire life, caused facial tics and spasms. And still, my compulsions don't go away, my anxiety has made me turn to self-medication via whiskey, and there are days when it feels like none of it is working at all anyway.

The point is, even at their best, this ongoing search for the perfect combination of medications is a neverending battle that keeps your psychiatrists nicely employed and your insurance company getting paid. Oh, did I mention they'll often give you a one month supply of meds and then not refill them until you come in for an appointment? That has resulted in some pretty emotional late night calls from me.

Of course, when you're incredibly stressed out and hit with a situation like, say, a pandemic, the whole process starts all over because chemically, your brain is in a new place.

And Now, COVID-19

Chronically mentally-ill people have spent our lives looking for a combination of things that will make us "well." Things that will make us able to "handle" life. Things that will get us back to "normal." But we know, as the other 80% of America is realizing, that there is no normal. And normal, for mentally-ill people, basically means alive.

Endorphin-releasing activities like exercise, seeing friends on Zoom, turning off the news, or calling Mom often just don't it for a lot of us. To top it off, a lot of us are experiencing new symptoms triggered by this tragedy and it's harder and harder to reach our doctors.

Some examples

Here are a few examples of intense reactions to the virus and how they might interact with underlying conditions. This is by no means an exhaustive list, and mostly taken from my own experiences. But I'm willing to bet I'm not alone.

Anxiety: What if I get this? What if I'm sequestered and isolated and in pain? What if I die and leave my loved ones in a stressful situation? What if I'm sick but I can't get a test? (Anxious people were told our whole lives that all of the worst case scenarios we thought about would never happen. Our loved ones wouldn't die, disease wouldn't ravage the world, people were generally good. There's been a whole lot of evidence to the contrary lately.) What if my business goes under? Why didn't I do a better job to secure it? Now I'm going to be poor and begging and starving like I used to be/always feared.

Depression: It's all my fault. I'm bad at my job and that's why my business is at risk/I've lost my employment. I've always been bad at my job. Look at all of the mistakes I've made. Why didn't I do more? Why didn't I take a different career path? Why didn't I work harder? No one cares if I get this virus. Most people who get it are fine anyway. Quit complaining. It's not all about you. The world is a shit show and I can't do anything about it. Corruption reigns supreme. Get over it. I've been fortunate in my life. Think of the people worse off than me! I'm so selfish!

Compulsive Disorders: Did I sanitize enough? I touched something with my bare hands! I forgot to wipe that item down from the grocery store. I need to wash my hands. Shoot, I touched my face! I need to wash my hands. Can you get it from a dog on a walk? Did I infect that dog's owner somehow? Can I get it from shoes? My cat rubbed up against my shoes. What if he gets it? None of these internet searches are turning up the same information!! Wash my hands. Pee four times before bed. Brush teeth six times. Brush tongue four times. Shave legs each night even if not hairy. It's 4am. Time for nerves to go berserk for no reason. Take a shower. Take Vitamins. Did I miss a medication? I've been so distracted. Did I take the wrong insulin? What if I did and I die during the night? Is my alarm set? What if I oversleep? Did I wash my hands before you ate that chip?

Bipolar Manic Phase: Can't get comfortable. Read something. I should read more. I'm going to bookmark twelve books on Scribd and I'm going to read them all. I'm going to become an author. I need to go back to school for writing. I'm going to look up programs. Can I afford these student loans? Yeah I'll just find a second job. I'm gonna set up an office. I have to clean out this whole room. I'm gonna go set up an eBay store for all this extra stuff so I can clean out my office and then I'll buy some stuff to put in there. Can probably get it cheap or free. Then I'm going to set up in there and write and then I can also take online classes and become a famous writer and they'll ask how I did it and I'll get a book deal and tour...

PTSD: Stay at home=Trigger of a time of complete isolation and being unable to reach loved ones. Stay at home=Trigger of an abusive relationship (past or ongoing) in which you felt completely trapped and yet too worthless to leave. Stay at home=Trigger of failure to plan an exit, take care of children, feelings of worthlessness and fear. Stay at home=Inability to escape. Stay at home with no work=Inability to focus on anything other than the traumatic event.

Substance Abuse: Constant thoughts of the culprit, easy access, less to do. Easy to go overboard. Often interacts poorly with medications.

Suicidal ideation: It's over. It's just too hard. I can't live in this world. I can't live looking back at my mistakes. The world is facing ruin. None of the good I have done has mattered. I don't want to hurt anymore.

These are SOME things I've been able to come up with. Everyone's different. Try having two of those things. Now put them in your head. All day, every day. Your doctor is unavailable, your meds aren't working, and you've been told to stay home.

Now What?

This disaster is going to cause more people to become mentally ill. The trauma of job loss and seeing loved ones suffer, anxiety around money and bills that keep coming, substance abuse that will arise as a coping mechanism, compulsions that will arise as a means of control, and many other mental health issues will be springing to life.

So here we are, the forgotten ones fighting those hidden battles, saying again, perhaps when someone's listening: We need better care. Affordable care. Care that doesn't rely on juggling a bunch of different colored pills to treat our symptoms. Insurance companies that don't change the cost of our medications on a whim. Therapists who listen and don't make us feel guilty for taking up their time. Therapists who don't treat us like a paycheck. Easier access to suicide hotlines, which have seen a huge spike since the crisis. A society-wide shunning of toxic positivity. ("Learn a new skill! This is a sign that you can do great things with all the extra time! Have a positive outlook and everything will fall into place!" Me: PUNCH.)

And please, make us feel seen. Since there will be more mental illness sufferers now, perhaps it won't be so hard.

Mental Illness Warriors: I see you. I wish I could help you. But I see you. And I believe you're fighting harder than ever.

*I am not advocating that you go off of your medication. It is important to follow the treatment plan set with your doctor. It can be really tough and scary, and I acknowledge that it is incredibly frustrating. But please do not adjust or go off of your medications without the supervision of a medical professional. Sadly, the devil we know beats the devil we don't.