Wow, You Seem So Normal. Acceptability and Mental Illness?

I was told the other day in I am sure what was meant to be a compliment "But you seem so normal". Huh. I'm still trying to wrap my mind around that statement. I guess I am supposed to be glad that I mask my symptoms well enough that I do not make people in my social circles feel uncomfortable. Quite frankly, I have never been "normal", do not even know what that means, and hope that normalcy never becomes a part of my life.

The implication is that I can be accepted in circles of middle and upper class, able, educated folks because I appear to the naked eye to fit all of those molds. I am middle class, I am well educated, and I am physically able. However, when I reveal to you that I have a mental illness because I talk about it openly for just this reason, there is no need for you to give me your approval of how that makes you feel. I get to be that person you know who is "one of them", but not really. And I am starting to wonder how I feel about that.

I wonder if all of these wonderfully accepting people in my life would have been so accepting and supportive 5.5 years ago when I was at my absolute lowest point in my life. I know the answer to that, because I had a large circle at that time, and when I got sick, people got absent. Not everyone surely, but a TON of people. At a time in my life when I was struggling to survive, when I was in the hospital, when I was isolating myself to my basement so that people would not have to deal with me, I was largely alone. Some of those people have trickled back into my life here and there, but it has never been the same.

So saying something like "you seem so normal" sounds like conditional love to me. As in, as long as you continue to be the girl standing in front of me, we're good, otherwise we may have an issue. It really is fine, I understand the dynamic. I get that you are not sure what to do with the mental health anomaly of a person who is not visibly symptomatic all of the time. So many of the thoughts of the mentally ill come from movie and television portrayals. People in psychiatric hospitals with a distant over-medicated look in their eyes, people violently acting out, mumbling to ourselves, twitching and on and on.

Guess what? Making you feel comfortable is exhausting work.

People who are really close to me know that it can sometimes be exhausting to be around me. When I am hypomanic, my thoughts are on an endless loop, my speech is rushed, I do not sleep for days, I cry easily, I make impulsive decisions. And I hate all of it. I do not know how to adequately explain that I know when I am not well, when my symptoms are getting out of control, when I am in danger of heading back to the hospital. I do not know what the experience is for other folks with mental illness, but for me, I am always aware and always monitoring. There are some more serious mental illnesses when control is not as possible.

I am in a much better place mentally than I was when I was first diagnosed and hospitalized. But for five months or so, until I got the proper diagnosis and medications, I was not okay. And I am not pointing fingers. Even my closest friends and family said and did things that were hurtful and because I love them, I have forgiven. But that is why it is crucial to me that I speak about my experience. Because the more I can talk about it, be real about it, and call out the misunderstanding I face in light of it on a regular basis, perhaps I am chipping away at the stigma and discrimination that we all face as a result of a health issue that we cannot control.

It is common for people who first hear of my diagnosis to diminish it with things like "we all have ups and downs", "who doesn't get worried or stressed some of the time", or my favorite, "sometimes I wonder how much of mental illness is even real". Live in my brain for a week, and I assure you that it is very real.

I have had Generalized Anxiety Disorder for a much longer time, and that was even more "acceptable'. Who cannot relate to having some anxiety now and again. So when I spoke of having an anxiety disorder, it was at a time when everyone was in therapy for something and it was almost fashionable to be on anti-anxiety medication. When I tell people now that I have Bipolar Disorder, I get a much different reaction. And it kind of breaks my heart.

Here's what it has meant for me lately. My husband's health insurance changed this year, and my mental health coverage changed dramatically. I had finally after two years or so of trying every combination out there, tweaking and changing, I was on a medication regime that was largely unchanged for a long period of time. And it was the most stable I have been since being diagnosed. But this year, those medications were going to cost me out of pocket approximately $2000 a month. Impossible. So I went to my psychiatrist, who I also pay for out of pocket now because my insurance is so bad that no reputable doctor participates in the plan, and asked her to help me to find something that would work and would be less expensive. She is wonderful and understanding, and we have been working diligently on a new combination with older meds that are on the formulary that my insurance company deems acceptable. And I am still paying close to $400 a month to take those, and they are much less effective.

I had to stop taking Cymbalta, which we discovered this summer has apparently been treating symptoms of fibromyalgia that we did not know that I had. So on top of fighting with my brain, I am now fighting with my body. I am currently trying not to let self-pity and despair overcome me. I am trying to take other self-care measures to make sure that what the medication is not treating I can control on my own. But it is not going all that well. As a result, I am beginning to feel some of the discomfort from others that I am all too used to.

In my world, the most important priority in my life is my husband and my son. So I put every energy into making myself healthy enough to handle those responsibilities. But I am having to make some decisions on what to back off on. And that is hard for folks to understand. I am trying really hard not to go into isolation mode, because that is a really unhealthy choice for me as well. Staying busy is one of my best coping mechanisms.

I share this with you today, because I need you to understand that no matter how badly I am struggling right now, I still consider myself exceptionally lucky. And that is truly a sad commentary. I will remind us all again of the multitudes of people who have to choose between life saving medication and feeding their children or paying the rent/mortgage. I will remind us of the huge numbers of people who are losing their lives to suicide because they are not being treated adequately. I will remind us that no matter how we present to you, or how acceptable our behavior is or is not, we still need lots of support.

I sometimes wish that I had had someone take a photo of me during one of my hospitalizations when like everyone else on the unit, I was dressed in pajamas and a robe, slippers, and not allowed to use a pen or shower without supervision. Because when things are the worst for me, I am indistinguishable from so many others who are not quite as acceptable to society.