I live most days in fear and frustration.
By: Roughly Ru
Tags: Mental Health Awareness, Mental Illness, Mental Health, Stigma

Fear that others will find out my secret, that I have a mental illness, and frustration from having to deal with insurance companies, healthcare providers, pharmacies, all the while balancing the exhaustion of having a mental illness with regular everyday pressures and responsibilities that we all deal with.

Since I was in high school, I’ve been battling mental illness. Misdiagnosed, mis-medicated, mis-managed; by no one’s fault of their own. I’ve struggled to find the right balance of medicine, therapy, support, and understanding. Mostly understanding of my own, how to take care of me; but the older I get, I realize it’s more misunderstanding of the world around us that’s the problem. 1 in 5 adults in America are diagnosed with a mental illness.

There are marches and fundraisers for the millions with cancer and other physical illnesses, yet we have swept the topic of mental illnesses under not just the rug, but under the rug, up in the attic, locked away. It’s taboo to have a mental illness; it’s taboo to get help for a mental illness, and it’s taboo to talk about mental illness.

I want to change the dialogue.

I want to change how people with mental illness can get help and from where.

I want to change the stigma surrounding mental illness.

I’m terrified that I’ll never get an interview, let alone another job as a result of my now willingness to be “out,” but the situation in our country concerning help, access to treatment, understanding, and empathy is so dire I cannot live in fear any longer. And hopefully, it’ll result in not living in frustration for much longer!

A few years ago a woman in my then office had a baby. We sent her congratulatory flowers upon the arrival. She took a few months’ medical leave from work for maternity time. I was not doing well mentally or sleeping and needed time to get medications in order, rest and get help, so I, also, took a medical leave. When the other woman came back from her leave, more flowers were on her desk. When I came back, nothing but emails. A couple months later, I took a week off to be hospitalized for suicidal ideation /med change under doctor supervision and the day after I returned to work, HR asked for a meeting to discuss my performance. I don’t care about the lack of flowers or talking to HR about how I can improve — I hate what they represent. From what I can gather, it seems as if people either don’t see mental illness as a legitimate illness in need of treatment or they don’t understand it and fear it. Movies and TV depict the mentally ill as “crazy, unstable people “ who aren’t to be trusted or counted upon.

But most of the frustration I live with lies with trying to get help, when I’m feeling brave enough to seek it. The phone calls with insurance companies, the doctor referrals, even when the doctor does not take insurance… the pharmacy trips… the lack of coverage for prescriptions or therapists…the judgement… the pain and sadness, the emptiness and exhaustion, and yet still having to spend 17 minutes on hold for every 3-minute conversation to get something authorized and confirmed. Days I don’t have energy to shower, eat, or function, I still have to work and battle insurance companies and doctors who do not accept insurance? Has anyone with cancer or diabetes ever been referred to a doctor who does not accept mainstream insurance coverage? MOST therapists and psychiatrists do not accept health insurance; and even if they do, good luck finding one you like who’s actually accepting new patients. How is one supposed to get help and pay for it? In most states it’s required if you own a car to have insurance. Why is it not also required, if you are a doctor or healthcare professional, to accept most health insurances? If we are an insurance-based society, then we need to make it mandatory for providers to accept that insurance. How can the FIRST question I’m asked when I call a doctor not be what’s my name, birthday, AM I SUICIDALl?… Every time I call a healthcare professional’s office who does take insurance the first question I’m asked is who is my healthcare provider. Nothing to do with my health. How am I going to pay? And then the battle for insurance companies to actually cover preexisting conditions or new treatments begins.

At the moment of beginning to write this I had been waiting for thirteen days to get a prescription, prescribed by a doctor for an (mental) illness. 13 Days. Thank god I’m not homicidal. It takes less time to buy a gun in most states. I had a good job with seemingly good health insurance. English is my first language. I have a master’s degree. Both of my parents have post graduate degrees. Hell, my father, himself, is a doctor; yet I cannot get medication prescribed for me to treat an illness I have. How do people without insurance, without working English skills, without pushy Jewish mothers who taught you to advocate loudly get by? If I am this frustrated and without medication, how do people who are less fortunate handle and cope and get treatment?

And how are we, as a society, OK with this? How have we set up a system that makes money for CEOs and offers very little care for the people they are supposed to be “covering”? How do lower income people and immigrants know how to navigate our formidable waters when we provide no compass or lifeboat as a society? How is this acceptable to YOU? When, most likely, your friend or family member is struggling navigating these same seas?

I’m picking too many battles to fight:

-Myself/health

-How to change stigmas surrounding mental health

-How to advocate on behalf of the mentally ill

-How to change insurance policy, health care legislation and social norms regarding mental healthcare

-How to find a husband (hey I have a Jewish grandmother after-all)

But these all need addressing, now. But how?

I want to get involved on a policy, advocacy level. I want to change laws, social acceptance norms and perceptions. I want to change the lack of access to help, and mostly, I want people to understand that there are days when I don’t get out of bed, call in sick, cancel plans — but I’m doing the best I can; and on my best days, with the right medication and support, I’m worth it. I can positively add to society. (And roast a mean chicken thanks to Ina Garten).

This piece isn’t about me and my struggles. I’m not writing this to complain, but to use what I know and have been through as a catapult to launch change in mental health acceptance and care. So that anyone, no matter their income, education, or healthcare coverage status, can have access to the treatment they need and avoid the discrimination we’ve allowed to prevail.