On Pain and Healing: How a Headache Helped Me Understand My Sister’s Schizophrenia
I had a headache.
Oh, I often have headaches, especially sinus headaches; they seem to strike with the changing of the seasons. But this one was far worse. It struck the left side of my head, like a metal spike protruding from my eye, going through my teeth, and ending down at the edge of my throat. It was bad, and it did not go away. Throughout the start of July, I struggled with this.
My little sister lives with schizophrenia, social anxiety, and depression; has come close to killing herself at times; has been through divorce; has lost a child through miscarriage; and has been through an exhausting journey of self-discovery, which she wrote about in her book, The In-Between. As she spoke to me about dealing with the pain in her life, I told her about my headache.
“Yes,” she said, with a laugh. “That’s what it’s like.”
My friend Rita has fibro myalgia, which means her nerves are in a constant state of anguish without any physical cause. Yet she is the first one to sympathize with whatever minor wound I’m dealing with. “Pain is pain,” she says. It doesn’t matter if that pain is couched in fancy medical terms like schizophrenia or fibro myalgia or if it’s just a headache.
Everyone has felt pain. Everyone has had to deal with pain. Therefore, everyone has the capacity to help another person going through pain.
When my sister was first diagnosed with schizophrenia, I had no idea what that meant, what was going, or how to help her. I wanted to help, but I didn’t know how. As I’ve grown older, I learned more and have a better understanding of how to help them with the healing process. To me, it all begins with empathy.
Walking in Another Person’s Shoes When Those Shoes Don’t Fit
I learn and understand the world through empathy. By that I mean, I put myself in another person’s shoes and try my best to understand what they might be going through. I do this by creating parallels. Maybe I can’t understand this big, massive thing, but I can understand this small thing and compare the two. Like the headache. I can grasp a headache.
When my sister describes how she can’t sleep at night, I recall how the stabbing in my head kept me awake. When she is frustrated by how schizophrenia keeps her from doing normal tasks, I recall how the headache kept me from focusing. No one could see my pain, but I knew I was experiencing it—yet I was afraid people would think I was making it up, using it as a crutch, as an excuse. And so I kept my mouth shut. I didn’t want to complain. I didn’t want to admit how terrible the pain felt.
Notice how I react to pain, gives me perspective. It helps me to figure out what I would want and need in in a similar situation and gives me the power to act.
This is important, especially when the other person is unable to express their needs. My sister has described her disease as being “like drowning.” When she’s in the most pain, when she feels like she’s dying, when she desperately needs help, it’s like there’s water in her mouth. She can’t cry out for help—let alone tell others how to respond.
Empathy creates a bridge. It helps me at least guess what my sister might need, even when she can’t tell me. Of course, it helps to be able to know for sure—usually by talking to her during calmer times. Once I make my guess, I can tell her and she’ll let me know if I’ve got it or missed the mark. Clarity helps.
Beyond this practical application, I think there is something spiritually healing about empathy. To know that someone understands you, that they are willing to share in your pain, that you are not completely alone—this helps. Even if the person doesn’t always understand what you’re going through, it helps to know they’re trying.
Healing the Pain, Not Fixing a Problem
I think there is this insidious notion in our society that everything can be “fixed.” Bad teeth? We can fix it. Overweight? Try our diet. Not attractive? Here’s some plastic surgery. Going through a traumatic experience wherein your brain is flooding you with pain every day? Take some pills. Everything will be better.
Except that it doesn’t work that way. Not everything can be “fixed.”
One of the eye-opening things I’ve learned about the schizophrenia is that there really isn’t a cure. The medicines manage the symptoms—sometimes—but the disease is still there, re-configuring the brain. If that’s too obscure, my friend with fibro myalgia takes powerful opioids every 4-6 hours to keep the pain from being overwhelming—but the pain never completely goes away. A slight bump will cause her agony, whether or not her pain pill has kicked in. The situation is the same for my sister. She’s always in pain, and there’s absolutely nothing I can do to stop it.
If you adopt the attitude, even unconsciously, that the way you help someone is by “fixing” their problem, it’s going to be difficult for both of you. You will never be able to “fix” them and you will become frustrated by your lack of results. The person, meanwhile, will start to go from thinking they have a problem, to they are the problem—and that’s never good.
If, however, you focus on healing, you have a better chance of being more useful.
Here’s the difference: no one can actually heal another person. A person can’t even heal themselves. Imagine a cut on your friend’s hand. Can you make the bleeding stop? Can you fuse their skin cells together? Can you will scar tissue to form? The finest doctor can’t do it. The person can’t make their own body stop bleeding.
The body heals itself.
But there are certain circumstances that can help or hurt healing, and that’s where other people can offer help. To me, healing another person means helping create an environment where healing can occur.
Time to Rest
Whenever I get sick, the first thing I want to do is sleep. I need to rest. That seems to be how the body heals; it shuts off all energy-consuming functions, like conscious thought and exercise, and diverts all its energy toward healing.
It’s one of the most basic things we know about health, and yet, it seems to be the one we’re quickest to disregard. We have things to do. We need to work. And so we push and push, until the body either floods us with so much pain we’re forced to stop or it just starts shutting off functions on its own. I’m lucky in that my body just shuts off my willpower and puts me on procrastination mode. My sister will push herself until she passes out.
When someone goes through a huge, painful thing like schizophrenia, they need to rest. One of the best things to do, I think, is to give them the time and space to do so.
I picture someone with a broken leg. It takes a long time for that leg to heal. If you keep asking the person, “Are you feeling better yet? Hurry up and get better,” they’re going to feel pressure to get out of bed. But if the leg isn’t properly healed and they start playing soccer, they’re going to break that leg all over again—and this time, it will be worse. If they keep breaking it, over and over again, eventually, it won’t be able to heal properly at all.
My sister told me that taking a year off between high school and college might have helped. Instead, we expected her to hurry up and finish school, hurry up and find a job. As a result, she went from breakdown to breakdown, until she gave herself a year off to heal.
I’m not saying to keep the person bed-ridden or locked inside the house. Just try to be patient if they aren’t able to do “normal” stuff. Give them permission to rest, to go slow, to move forward at their own pace.
Small Acts of Service
When I want to help, I always think it has to be some grand act of heroism, like passing a Congressional law or launching a non-profit organization. Actually, I think the person most appreciates small, day–to-day acts of service, like driving them to the doctors, picking up their medicines, or making dinner. You know, the sort of things you’d do if someone had a cold.
Although I know I can’t actually make someone feel better, I do have one trick that sometimes helps: I distract them. I talk about books or movies or something they like; I read them parts of books or get them to watch a movie with me. This helps them feel good and gives them a brief respite from the pain. Plus, the company helps.
For my sister, one of the things that help her a lot is advocacy. This sounds big and scary, but it really means explaining to other people what she’s going through, so she doesn’t have to do it herself. For example, if there’s a family get-together and she can’t make it because she’s having a panic attack, letting other family members know.
It’s not so much that the acts are grand; it’s the consistency and the consideration behind them that adds up to something meaningful. Little things can make a big difference.
Knowing When to Step In
Most of this has been about healing, which is a very slow, low-action of process. However, there are times where there is a problem that needs to be fixed immediately.
For example, any time a person is bleeding. My sister used to cut herself or scratched long gashes into her arms to deal with the pain. If a person shows signs of injury, if they are suicidal, if their behavior is significantly worrisome, then you step in. You take them to a doctor and get them help.
There are times of crisis. These are the big, dramatic moments that we all dread. And they happen. As time goes by, you hope to get better at reading the signs. You check in on the person a little more often. You try to handle the problem before it gets too big.
I haven’t had much experience in these situations, so I have no words to say about this, except that my heart goes out for people in these circumstances. When people are in crisis, you need to act quick and decisively. When they are not, it’s more about patience and understanding. Most of the time, people are not in crisis—but the crisis can happen suddenly and without warning. It’s hard to know what stage they’re in or how to switch back and forth between these mindsets. I think it’s hard for the person as well.
Live and Learn
I have one last thing to say. I wrote this article, not for my sister, but for my mom. She came to me after trying to read my sister’s book, upset at home much my sister suffered and how little my mom even knew about it. How could she have not seen the signs?
But she didn’t know because she didn’t know. Nobody knows, at first.
You learn. And it’s hard and it can be painful and you make mistakes. And I’m writing this because I have made mistakes, so many mistakes, but I have learned. And maybe by sharing, I can help other people to learn as well.
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Writer. Critic. Dreamer.