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A little over a month ago, my fifteen-year-old sister tried to kill herself for the fifth time in a year. We thought she was dead. I got a call at work telling me she’d disappeared from school and the police were searching for her and I truly thought she was dead. I sat at my desk and started trying to figure out how we would handle her funeral. She was found by construction workers (or she asked them for help – I’m a little fuzzy on the details) and the cops came and took her to the hospital for her fourth hospitalization. The only reason she is still alive is because she happened to take the wrong knife.
I wish I could explain to you how my family is doing. My parents, who have always looked young for their age, are suddenly old and worn out. My other sister has thrown herself so viciously into work and college that I’m sure she is headed for a nervous breakdown of her own. The hell that my family has been going through for more than a year now has left us battered. A cacophony of emotions constantly threatens to overwhelm us, and it is difficult to deal with the anger, sadness, and fear because we have had to be so vigilant in giving her the care she needs.
I’m not telling you this because I’m trying to get pity, but because all of this has left me convinced that there needs to be a seismic shift in our mental health care, from the medical treatment of it, to our economic and governmental involvement in it, and our societal attitudes about it.
With my sister’s four hospitalizations we have gotten at least four conflicting diagnosis of what is wrong with her. This isn’t counting various other psychiatrists and therapists, who have all had their own theories. I want to make it clear that I am not knocking her doctors. They are all fine people (some of whom are among the best in there fields) but they can only work with what information they have, and as far as I can tell, the research in mental health simply isn’t there. We know what’s wrong with her is linked to the physical, something wrong in her brain, (as are most depressions) but I don’t think the doctors know yet what exactly is wrong (it’s something in the brain/hormone levels, but they don’t know what). This means that they throw medication after medication after it – essentially experimenting on a kid – and mostly the meds do very little, if anything, or in one drastic case, they made it much, much worse. She’s taken so many different medications now, she’s convinced that none will work, and even though this current combination seems to be doing something, she’s vowed to stop taking them the minute she turns 18 and my parents can’t force her to anymore.
This method of treatment isn’t good enough. The research needs to come, and quickly, that clearly labels each mental illness and its treatments, the way we do with infections, or viruses, or cancers. I’m not saying mental illness is exactly the same as a virus, but it is grounded in the same physical world as one and this approach would at least be a start. I’m aware that I’m simplifying things greatly here, but my point is that there needs to be so much more research and the medical establishment needs to start more actively treating each mental illness separately, not as something under a huge umbrella name.
After the start of every episode with my sister, I know my parents are worried, stressed, and scared. And I also know that they sit in the hospital wondering how in the world they are going to cover these hospital bills on top of all the previous ones. Before all of this started, I would have told you we were, while not on fantastic financial footing, at least doing decently. Now, well, things don’t look nearly so good. My family’s health insurance is considered very good – it at least is paying for a percentage of the bills, but we are still looking at something like $15,000.00 worth of debt – and that’s before this latest hospitalization and subsequent out of hospital treatment. And I know we are one of the lucky families. It could have been a lot worse. The thing is, I can’t figure out why health insurance companies are allowed to treat certain parts of our health as not being part of health care. If my sister, heaven forbid, had been diagnosed with cancer or some other debilitating disease, there would be a yearly cap on out-of-pocket spending; I think it’s around $1,500.00. But that cap doesn’t apply to mental health. I don’t understand why not, the same way I don’t understand how vision, or dental, or hearing can be treated as not part of our normal health, but as something different. When the fundraiser was held on here for ThomCat’s motorized chair, I was happy to donate what I could, because it was the right thing to do. But we shouldn’t have had to. I always thought that health care was about a large number of people paying what they could so that the people who needed care would have it. Unfortunately, it has not worked out that way.
My family is part of the lucky group – the insured. Without our insurance, our bills would be much, much higher. With us, it wasn’t a question of if my sister was going to get the care she needed – she was going to get it and we would figure out the bills later. I don’t know how families without insurance handle it. It breaks my heart to think of the millions of people who are not getting treatment because they cannot afford it. No one should have to survive without the medical care he or she needs and no family should have to deal with the stress of the bills on top of the stress they are already dealing with because a family member is sick. Health care and hospitals should not be run as businesses.
It is way past time to push for universal health care (or a single-payer system, or whatever you want to call it). It is unconscionable that one of the wealthiest countries in the world cannot give adequate health care – care that covers all parts of our health – to all of our inhabitants.
I am part of a close-knit family and an extended group of family friends (who are family in everything but actual blood). Usually, when there is a crisis in our family everyone knows immediately and drops everything and comes running. With this situation, however, my immediate family closed in on itself – most of our extended circle didn’t know how bad everything was until about December. We kept quiet partially out of shock, partially out of shame, partially because we were so overwhelmed, and partially because we were trying, as best we could, to protect her from the curiosity, the recriminations, and the judgments that were going to come her way. What I was (foolishly) unprepared for was the amount of, well, unwelcome opinions from (mostly) family members, who are all positive that the choices we are making for my sister are the wrong ones. I understand where they are coming from – there have been moments where I have wanted to absolutely scream at my parents, I so violently disagreed with decisions they were making. It’s really hard to rationally remind those people who are judging us (and even, at times, to remember myself) that we are only dealing with bad option right now. Really, no solution or situation we have is without some major drawbacks.
I understand the urge to judge. Our society has a tendency to deem mental problems as a weakness of character rather than the illnesses that they are. We have celebrities telling us not to get psychiatric help (and while we laugh at Tom Cruise, the idea is pervasive) and the media treats us to a three ring circus with many of our sick stars, the latest being Britney Spears, but there have been many before her. There needs to be a massive push to educate people about mental illness as a disease, and not as a character flaw. I’ve been trying on the local level, reminding people (and again, sometimes myself) that my sister is still the sweet, kind, smart, talented kid she has always been, but she is sick, the current illogical behavior isn’t her, but the illness, and while there are no promises, we are doing everything we can to make her well again. It’s not enough, though. I can’t talk to everyone. Until attitudes change, I’m going to worry about how people will treat her. She now has scars that are very visible and will take a long time to heal. She is already getting some grief about them and I hate that she needs to defend herself, especially because I am not confident she is capable of doing so.
On the third day of her hospitalization I came back onto DU to find at least a half dozen threads in the Lounge talking about suicide. I don’t know what prompted them, and honestly I don’t care. It saddened me that so many people have had to deal with the depression that leads to suicide, and it upset me that so many felt so defensive. While I have dealt with my own depression, I have never been suicidal, so I cannot pretend to understand what they are going through, but it seems to me that the least we can do to help is to refrain from being judgmental. We would not blame someone who was diagnosed with multiple sclerosis for his or her diagnosis, and we shouldn’t in this case either.
My sister is now back in school, once again playing her cello, and most promising, talking about college plans. I know we have no guarantees and tomorrow everything could change, as it has over the past several months, but right now I am cautiously hopeful that she is over the worst of it and the rest of us can begin to heal.
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