What’s in a name? That which we call a rose by any other name would smell as sweet. Someone smart said that once.
I have been struggling with this concept for a few years now, however in the past few weeks it has come up repeatedly for me. A diagnosis is the first thing we ask about and want to know things are going wrong. I did this the other night with a situation that a friend is going through with their sister. Before I could help it, I found myself asking, “Does anyone know the diagnosis?” In essence I’m saying, what’s wrong with her and what’s it called? As if having a name is going to solve all the problems of the world. That’s obviously not how it is, although it sounds very appealing. Fortunately or unfortunately, even with a specific diagnosis, we must reexamine our entire life when something is that pervasive and life-changing (like ulcerative colitis or bipolar or diabetes or whatever) to dive beyond the symptoms and figure out what is really going on.
This blog post has been extremely difficult for me to write. I think it’s because I see both sides of the argument very clearly, and I haven’t decided which side I want to take. Accordingly, I’m going to break it down as if I’m writing both sides of an opinion piece. We’ll see if I come to any conclusions….
Naming the Game: it’s the way to go!
When I was first struggling with my ulcerative colitis, it was a scary and tenuous time in my life. I mean, I was 22 years old, no real history of illness, and now there was blood in the toilet at the wrong time of the month. It was weird. Especially considering my entrenchment in western medicine at the time, I was desperate for a diagnosis. Just tell me what’s wrong with me so I can take a pill or have surgery and be done with it. I heard about a case study once of a woman who was going to the doctor’s office every year afraid of cancer, despite being very healthy. When she was diagnosed with breast cancer at age 42, she reported feeling relieved. She had spent such a long time agonizing over the possibility of cancer that once she had a category to put herself in, she felt as if she had a place to belong. And I think that is the most powerful part of someone slapping a label on you. Humans are categorizing creatures and it makes us feel good to have a spot to neatly classify things. “Oh, you have XYZ disease. Don’t worry. We have XYZ intervention/medication and that will be fine. Here’s a group of people to talk to with the same problem.” By having a doctor tell me I have UC, I was given a starting point. I could join the IBD support groups and google relevant interventions and feel good that I was part of a select cohort who could understand my pain.
In spite of a common diagnosis though, my UC looks incredibly different from all of the other UC patients that I’ve met over the years. In fact, from the anecdotal perspective that I’ve experienced thus far, no two patients seem to express UC the same way. Some have to go to the bathroom 20 times a day. Some go 2-3 days without pooping. Some eat meat and bread like it’s going out of style. Others can only find relief in vegetables and fruits. Some have tons of blood in their stool, some have none at all. Some have crazy gas pains and acid reflux, others have never experienced such symptoms.
Which leads me to…..
Name, schname: what’s the flipping point??!
The importance given to a diagnosis is downright dangerous at times, whether it be for a physical or mental illness. Many people find themselves over-identifying with their disease. Extremists may even use it as an excuse to do or not do things. At this point of my life/illness/balance though, I don’t think there is a single diagnosis that I could personally receive that would make me change how I treat it. Now, this may be a bit unfair given all the work I’ve done over the last 9+ years wrestling with a diagnosis. If I were going through this process without an initial diagnosis, would I be able to attack it in the same way from the beginning? It’s cute for me to sit here with 20/20 hindsight and say, “Well going forward, I know this is what I would do” because I’ve already been through it. And maybe we all have to go through it to figure out what works best for our body. However I am hopeful that even if I had an undiagnosable disease at this point of my life, I would have solid steps and interventions to make my body the best version it could be.
I prefer to think of a diagnosis as a conversation starter. “Hey you have schizophrenia? Great, here’s an area to begin, only know that this isn’t the end all/be all for the rest of your life.” Even something simple like a common cold is extremely vague and unique to the person. There are medical and homeopathic remedies that work for one person that will never work for another. Basically the diagnosis is nice and all, but doesn’t answer the true questions or do the real work of finding a cause and treating that.
A few years ago, The Soloist, with Jamie Foxx and Robert Downey, Jr. was released in theatres and it wasn’t the greatest movie ever, but it deeply moved me. In 2009 when it came out, I was in a bad place with my colitis and was extremely unclear about what I was going to do next. None of the medication was working anymore and I was feeling stuck. The main character (Jamie Foxx) has fairly severe mental illness and it was very hard on his family and those around him who wanted to help him. In one scene, there is a group counseling session and a character remarks:
“I mean, it’s tired. It’s like they can’t find the medication that’s right for me, you know?”
Whew. I started crying just by her saying that! haha. I’m emotional. Still, it is SO FRUSTRATING despite having a “diagnosis” that doctors can’t seem to help you. They have a honest motive, yet medicating a chronic illness is so…..ineffective. It’s hard on the patient and the doctor.
The best scene though was when Robert Downey, Jr. was talking to the man running the support group. He still was learning about Jamie Foxx’s condition and desperately wanting to help the only way he knew how. Here is their exchange (I can’t find it on youtube. It is about 47 minutes in to the movie if you own it or rent it.)
Robert Downey, Jr, talking about Jamie Foxx: What does he have, schizophrenia?
Group Leader: I don’t know.
Well, we should hook him up with psychiatric services and find out, right?
Yeah…I don’t get too hung up on diagnosis.
What do you mean?
What do I mean?
But how do you help someone if you don’t know what they have?
Look at these people. Every one of them’s been diagnosed more than you can imagine. And as far as I can tell, it hasn’t done them any good.
But he needs medication, right?
I’ll tell you one thing he doesn’t need: one more person telling him he needs medication.
This scene made a lot of sense to me on many levels. To be fair, it comes out of an exasperated situation where people are at the end of their rope. Would the group leader have the same opinion if all them had never been given a diagnosis or talked to a professional at some point? Probably not. I guess at the end of the day, the diagnosis is important only as much as it can help you. As long as you (or your practitioners and healing helpers) aren’t falling on your disease like a crutch, then it can be productive. Writing things off simply because of a disease title…well I can’t seem to wrap my head around that one.
I’d love to hear your opinion! Either here in the comments or in an email or in person next time I see you! I am fascinated by this right now and want more input as my opinion forms….and then of course I’ll change my opinion 50 times after that. :)
ALISA’S MUSIC CORNER
The Beatles! Maybe you’ve heard of them? I’ve been listening to them a lot this week. They have so many ridiculously amazing songs; it’s hard to pick one to talk about. I’ll pick a cover actually. The best cover of Let It Be (in my opinionated opinion, of course) was from the movie Across The Universe. In the movie, they took Beatles songs and made a musical with only a small amount of dialog which was interesting. The intention and creativity behind the song choices was very well done despite the movie itself being kind of slow.
On the DVD extras, they show behind-the-scenes footage of the supremely talented woman chosen to sing Let It Be. This is not on the youtube clip, but the director had asked the woman to simply think about the 1967 riots in Detroit and the meaning of the lyrics as she was singing. Those riots raged for 5 days and included the National Guard, army, tanks and machine guns. The riots left behind 43 dead, 1,189 injured, 7,200 arrests and over 2,000 buildings destroyed. It is devastating to think about.
Wow, I must be my father’s daughter, bringing it to war culture out of nowhere! Nevertheless it gives you a little context for this clip. Those darn Beatles sure know how to write a moving song.