I’m 24 and the oldest kid in my family. For 21 years and one month of my life, I had a little sister. My memories include the things that are pretty standard to sister relationships: playing Barbies; playing dress up; fighting over the TV remote and “borrowed” clothes; the Halloween when she visited me at the college that she would later attend too; our weekly “Meatless Monday” dinner dates in the school’s dining hall; the Friday or Saturday nights we spent lying in my bed watching movies together instead of going out and getting drunk with our friends.
I also remember the things that are not as standard: following her into a restaurant bathroom so she wouldn’t throw up her lunch when she was 11; the time she almost got arrested for shoplifting; the way she bared the scars on her upper arm from cutting; the winter breaks she spent in bed; the weeks she spent in psychiatric hospitals; the impossible-to-follow conversations we had during her months-long manic episode.
These are the things that, up until Wednesday, March 26, 2014, I didn’t discuss much. I had a whole archive of these close-to-home experiences with mental illness without any concept of the greater mental health care context. And without such basic understanding of what it’s all about or a shared common knowledge that would allow me to both ask and answer questions with even the slightest degree of confidence, I had little-to-no idea of how to talk about anything related to mental health.
On that Wednesday, I got the kind of breathy-bumbling-hard-to-hear call from one of my sister’s best friends that I’d only gotten once before, four years earlier. Then, I was a sophomore in college and my sister was a junior in high school. She had tried to stab herself in the chest with a knife at a party. This time, I was a second-year teacher at a high school outside of New Orleans and she was a junior in college in Colorado and her body had been found in a car outside of her residence hall.
Somehow, in a state of shock, I managed to get a plane ticket that would get me home to the Philadelphia airport by 1 a.m. I cried through two flights and the Chicago O’Hare layover. I looked like I’d gotten punched in both my eyes.
Since then, this is what I have learned:
1). It’s not always easy to recognize that you have a mental health problem.
Toothaches are easy. We assume that everyone goes to the dentist and we talk about going to the dentist. It’s okay to come in late to work or school if you were at the dentist. Everyone is supposed to go to the dentist twice a year to make sure they don’t have cavities. But everyone is not supposed to go to a psychiatrist twice a year for a mental health screening. We don’t learn that it’s okay if we don’t know how to manage racing and anxious thoughts, feelings of helplessness, isolation, or hopelessness. It can be hard to accept and hard to admit that it’s possible that our thoughts might be out of our control. It can be even harder to accept that we might need help from a doctor or medications to make these thoughts less painful, invasive, and crippling. Plus, talking about mental health when it’s personal often feels like a slippery slope: I don’t know what to say; I have no idea how people will respond; I don’t want to make anyone feel worse; and, sometimes, I just don’t feel like getting into it. It sometimes feels easier to claim that we’re perfectly fine and perfectly healthy. No one ever questions it.
2). It is not always easy to accept that you need treatment, even when you do recognize you have a mental health problem.
Though many wonderful resources exist (like this one), I still sometimes don’t know if my anxiety is crippling enough to warrant seeing a therapist, just like I sometimes don’t know if my fever is high enough or my ankle pain is bad enough to warrant seeing a doctor. I sometimes still fear that I am weak– or that I will be perceived as weak– because I can’t tough it out on my own, can’t fix my own problems with self-discipline and self-help books and self-control. I constantly have to remind myself that mental illness such as depression, anxiety, OCD, schizophrenia, addiction, or disordered eating is neither anyone’s fault nor their choice.
3). It is not always easy to find treatment for a mental health problem, even when you do accept that you need it.
Tough as it is to know when you need treatment, it’s also hard to know where or how to get treatment. It’s harder to ask a friend, let alone an acquaintance, for a recommendation of a good therapist than it is to ask if he likes his dentist. I had to use Google to search “therapy” plus “grief” plus “eating disorder” plus “New Orleans” to find my current therapist. Therapy is expensive, and insurance is only so helpful. Unfortunately none of the therapists I have worked with have accepted my insurance, but I’ve been fortunate enough to have parents who are able and willing to help me pay for it.
Plus, if you are in need of more intensive treatment such as an in-patient treatment program, psychiatric hospitals will kick you out after a certain number of days regardless of your condition if your insurance no longer covers your stay and you can’t pay (see this article). Patients are left to deal or not deal with their sickness on their own. Along the same lack-of-access-to-care line, there are often months-long waits to get initial consultations with good psychiatrists, just like there are often months-long waits to get initial appointments with other types of specialists.
4). It is not always easy to find the best treatment for a health problem– be it cancer or bipolar disorder– even when you do find treatment.
Once you find a good doctor and a way to pay for your appointments, there are often multiple approaches to treatment, med adjustments, and side effects to sort through. Pill dosages and cocktails must be monitored and managed. All the trouble is worth it. According to the National Alliance on Mental Illness (NAMI), “The best treatments for serious mental illnesses today are highly effective; between 70 and 90 percent of individuals have significant reduction of symptoms and improved quality of life with a combination of pharmacological and psychosocial treatments and supports.”
But when the treatment isn’t just right or isn’t quite enough, you can lose someone you love– someone like your sister who knew she had an illness and knew she needed treatment and was getting it.
If we truly want this system to ever change, we need to learn how to speak openly about mental health.
This article originally appeared on November 10, 2014 in MouthyMag. It was edited with the help of Mouthy’s wonderful staff.
