What’s in a name?

So I’ve thought a lot about how difficult it is to just put a name on what I experience. For years, I really wasn’t sure what I had, as I mentioned before and will need to write more about. So if it was hard for me and doctors to label my condition, then explaining it to others is even more of a challenge, even now. Then, even if there is a name, communicating correctly to others so they will really understand is even more challenging.

For a comparison and introduction to my thoughts on this topic, I have a daughter who has Down syndrome. Over the years as I’ve been involved with organizations that advocate for people with disabilities and have spent time talking with other parents, I have been actually very grateful for the fact that my daughter has a very straightforward diagnosis. I’ve met people whose children obviously have cognitive challenges but who have spent hours and hours in doctors’ offices and with other specialists, trying to determine just what their child is dealing with. It’s vital to have some kind of diagnosis in hand in order to effectively move forward with some kind of treatment and/or (especially) educational plans and specialized services. It’s no doubt sometimes a challenge to have a child with a disability (again, whole other topic here), but it seems to me that it’s even more difficult when you can’t put a name to it. I’ve had 14 years of knowing I have a child who has Down syndrome. She’s received the services she’s needed, by and large, over the years, and it’s been relatively simple to make those happen.

What makes her situation simpler also is that her condition is easy to observe on the outside. The physical characteristics that are signature Down syndrome traits are literally written on her face, and pretty much everyone knows by looking at her that they should have some types of different expectations from her. I don’t want anyone to think that I want people pre-judging my daughter or having low expectations for her because that’s not at all what I’m trying to say. But when she behaves a little differently than most people and hugs everyone and talks with a bit of a speech impediment and so on, I can feel fairly comfortable knowing I don’t have to try to explain away what she’s doing because many people will already know there’s a reason to cut her some slack behavior-wise.

A similar “rule” applies to people who have physical disabilities. Many of those can easily be observed; if someone is in a wheelchair because of paralysis or uses a cane because of a limp or even has a seeing-eye dog because of blindness, that person instantly can communicate without needing to say a word that he or she has a particular challenge to which others might need to be sensitive (although they generally just want to be treated like everyone else, their situations are at least fairly clear to others, and then others can choose how to be most sensitive and kind to them). But mental health issues are completely invisible. No one can tell by looking what someone who struggles with mental illness is having to cope with.

The companion issue is that mental illness simply is not as readily understood as physical illness. Each individual in this world has a package of trials and difficulties (as well as talents and skills and interests) that is unique. Some face tremendous trials in this life. Some are open about some of the things they face, and others prefer to be quite private, sharing details or even basic information with very few others. So some people who are diagnosed with cancer will talk readily about their illness, their treatments, their prognosis, their fears and frustrations. Others will keep quiet. But those who do share more, for instance, a cancer diagnosis, will likely be quickly understood. “Cancer” is a word that is easily communicated in our society; listeners will think “chemo,” “surgery,” “radiation,” “sick,” “death” or “remission” when they hear it. They will feel compassion and a desire to help, perhaps with meals or rides to a doctor or something similar.

On the flip side, however, is mental illness. Mental illness today, with its various diagnoses like schizophrenia, depression, bipolar disorder, and so on, is coming out of the darkness in a way; more people talk about it in society, but it’s still not as easily understood as physical illnesses. There is generally no stigma associated with illnesses like cancer (although, frankly, there can be a bit with some illnesses that can be linked in part to unhealthy habits), but there is lots of misunderstanding, confusion, and stigma associated with mental health. Either people think that mental illness really doesn’t exist and a sufferer is “making things up” or trying to get attention or something else, or they think that their mental problems are bad habits that just need to be broken. Someone with depression could be told to look on the bright side or to just force themselves to get out and about, for example. Or others may simply recoil a little bit from someone who has a mental illness; they may be seen as weak or “crazy” or “scary” or unbalanced. Mental illness can make others feel uncomfortable and nervous, rather than compassionate and eager to help and lend support.

So back to the name. When I have chosen to share with someone, briefly, that I deal with issues of mental health, first, over the years, I wasn’t sure what I did have, and now that I (basically) do, I still can’t just say, “Well, I have atypical bipolar disorder or bipolar II.” No one knows what that means. Communicating requires that both people understand the meaning of a word. Like I said before, if I say, “I have cancer,” I can pretty much leave it at that and someone else would know what I meant. But if I wanted to briefly mention, “I have bipolar disorder,” half of people wouldn’t know what I meant. Even if they did, my version of this “spectrum” is practically unique to me, so it would require several more paragraphs to get across a basic meaning that one or two words couldn’t convey, as “cancer” would for that illness.

What’s the upshot? It’s just a lot easier not to ever tell anyone what I deal with. One, I can’t say it quickly and move on to other topics. Not possible to communicate what I need to quickly. I might find someone who is very sensitive and eager to talk to me about it, but it’s going to lead to at least a 15-minute conversation, and sometimes there’s no time for that. Two, if I do say what I have, and someone else basically understands what I’m talking about, there’s always a possibility they may have a negative connotation in their minds that will lead them to make judgments about me that I’d rather them not make.

On my bad days, I’d be happy to stay at home, keep to my bed, and refrain from human interaction so as not to offend or cause any problems. But many of those days, since I do have four kids and lots of responsibilities, I still have to be out and about, getting things done. I’m then more likely to be impatient or super-irritable or sometimes just want to cry over something dumb that wouldn’t bother a normal person (or me at some other time) at all. It’s those days I wish I had a sign on my forehead that just says, “Please excuse me. I have a mental illness; I do my best to deal with it constructively; I take medication, I see a therapist regularly, I try to relax and take care of myself as much as I can given my limitations. But I have a family; I have responsibilities, and life goes on. I’m standing in this line that has taken forever and it’s making me feel completely at the end of my rope. I’m valiantly doing what I can here, but my best on this kind of day isn’t too great. Please give me some leeway and smile at me encouragingly or just try not to judge me.” But my forehead isn’t as big as a billboard (thank goodness), and this sentiment wouldn’t fit on it.

So no, there is no outward sign of my inward distress to give people around me (strangers or friends) any indication of what I deal with regularly or if I’m having a bad day in particular. (Very close friends will understand if I just say a few words because after years of talking and explaining, some shorthand will work. But this only applies to a handful of individuals in my life. You know who you are.) There are no physical indications, no typical characteristics to tip anyone off. And if I were to say something to someone else, I couldn’t really capture the essence of what I want to convey in just a few quick words. It’s frustrating. Again, this is all part of why I’m writing on this blog. I’d like to extend to others who don’t have my particular challenges the kindness of helping them to see more clearly from my viewpoint, all at their leisure whenever they’d like to read this. And for those who experience similar feelings, I hope you can feel a kindred spirit.

Life of the mind Life with Down syndrome

lifeandlims View All →

I'm a book reviewer, editor, and writer with four daughters and tons of projects always keeping me hopping. I blog at Life and Lims and run the book review site Rated Reads.

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