On June 6 the Free Press published my article about Allison Alexander’s new book Super Sick. I was only able to include a bit of what Allison told me about the book, which focuses on her experience of chronic illness and faith. Here is the complete transcript of her remarks.
What is the nature of your chronic illness?
I have severe Irritable Bowel Syndrome (IBS). I also have several other issues that may or may not be related, such as iron and B12 deficiency, nausea, insomnia, recurring infections, anxiety, and depression.
During the past couple years, I’ve added chronic pelvic and neck pain to that list. Conditions seem to pile up for people with chronic illnesses. Most of the people I interviewed in my book have more than one thing going on.
How long have you had it?
For as long as I can remember—my best guess is it started when I was around 7.
What are the challenges it poses?
I get severe attacks of stomach pain anytime, anywhere, and usually have to find a bathroom fast. There are lots of challenges—for one, it's not a "socially acceptable" illness—sicknesses that involve bowels, constipation, and diarrhea never are. For another, it's invisible. People don't know I have it unless I tell them.
Chronic illnesses of any kind pose numerous other challenges—exhaustion, feeling worthless because you need to rest and can't always do the same things others can, feeling guilty when you cancel so often, depression, and anxiety.
Finding friends who understand can be difficult. Singleness, dating, and marriage are difficult. The list goes on.
How has it changed your outlook on life?
This is a difficult question because I've never not been sick. This is just how it's always been for me, so I didn't experience a change like some people do when they develop an illness at a later age.
That being said, I still grieve the loss of good health. I have good and bad days, and the good days give me an inkling of what being healthy all the time would be like. Being sick has certainly contributed to my outlook on life and my personality, but I can only speculate as to who I would be without it.
It has certainly contributed to my awareness of minorities and my understanding of what other people with disabilities go through. I suspect it has made me a more compassionate person, as well as an emotionally exhausted one.
How do you incorporate it into your writing?
The topics I write about the most often in online publications are pop culture, faith, chronic illness, and mental illness (sometimes all in one article!). I find myself writing more and more about chronic illness lately, especially in relation to how its portrayed in fiction.
I also write fiction stories in my spare time and include heroes with chronic illnesses and conditions because I want to be the hero, not a side character or villain.
What is Super Sick about?
Super Sick is about living with a chronic illness in a society that tells us we need to be healthy, productive, and successful to be valuable. I share my life experiences and include insights from other people who wrestle with chronic conditions.
I also point out how illness and disability is represented in TV, movies, books, and video games, and why that matters.
Why did you write it?
For three reasons:
First, I've written articles on chronic illness in the past and realized I had more to say on the topic.
Second, I've felt isolated in the past, not realizing there were other people out there going through the same things I was. I wrote this book so others wouldn't feel alone.
Third, writing is cathartic for me. It can help me work through my own struggles and emotions. Writing this book helped me to think deeply about each facet of my illness, how it impacts my life, and how to find peace through the pain.
What do you hope readers will take away from it?
I hope disabled people will experience hope, learn to find peace in suffering, and know they are not alone. I hope healthy people will understand their loved ones' illnesses better and the challenges they face. I hope everyone will realize why representation matters.
What has the reaction been so far?
The reviews I've seen have been overwhelmingly positive. Readers have latched on to the pop culture angle of the book, and many have said they have never thought about how disability was represented in fiction before.
Several have also commented on my candidness and willingness to talk about difficult subjects, no matter how "taboo" or embarrassing. That was also one of my reasons for writing this book—that so few people are talking about this stuff, which results in silent suffering.
Can you give me an example from the fantasy world about chronic illness?
J.K. Rowling intended the character of Remus Lupin to represent the stigma surrounding blood disorders like HIV and AIDS. In the Harry Potter series, Lupin is a werewolf, and even though he takes a potion every full moon that makes him safe, he can't hold a steady job because of the prejudice about his condition.
In Super Sick, I discuss Lupin in the chapter about dating and romance. Lupin struggles with letting himself be vulnerable and thinking he is worthless because of the way others have reacted to him—something people with chronic illnesses and disabilities are familiar with.
He pushes away the woman who loves him because he thinks she could do better, even though she wants to be with him. I've experienced similar fears and so have many others with disabilities—why would someone choose us when there are plenty of healthy people to go around?
How has faith (or the church) made being chronically ill harder or easier?
When it comes to the church, I've found it has made being chronically ill both harder and easier. Some Christians believe that if you're sick, it's your fault for not having enough faith, or because of a past sin you haven't repented for. This attitude is extremely distressing and damaging—that I'm not acceptable, or a "true" Christian, until I'm healed.
Here's a passage from my book that speaks more to this:
"The very humility Christ displayed, a trait we’re supposed to model ourselves, sometimes gets shunted aside in favour of considering ourselves “chosen ones” or divinely directed to tell others how to turn away from their sin. There is a movement in Christianity called prosperity theology (or “health and wealth” gospel) that is especially damaging to poor and suffering people, because it suggests if we’re not happy, healthy, and wealthy, we must not have enough faith. If we just prayed more, or read our Bible more, or went to church, we’d be as content as Groot, as healthy as Captain America, and as rich as Tony Stark.
“The other day, a friend sent a string of text messages out of the blue, saying she’d had the exact same health problems I was experiencing but she’d found the spiritual root of her unhealthiness and was now free of her symptoms. She was praying for healing and freedom like that for me, that I would find the root of whatever sin was causing my sickness. She texted me again the next day to see if her prayers had solved my issues.
“They hadn’t. Because God hadn’t pointed a finger at me to say, “You are cursed with pain until you, or people around you, pray harder to make up for when you ran that red light last week!” If that was the kind of being I thought God was—one who decided exactly what hardship I would go through and made it happen—I don’t think I would be a follower of Christ."
“However, other Christians believe that illness is part of being human in this world, and it doesn't mean God is punishing me for something. Those are the Christians that make living with chronic illness easier. They are also the ones who don't just say "I'll pray for you," but offer to bring a meal, or pick up medication, or come sit in the hospital waiting room, or play a video game with me to help distract me, or whatever it is I need. Sometimes all I need is a prayer, but other times it's more practical help that makes life easier. This is the Church as it should be—reminding me that I am loved, valued, and cared for.”
As for faith, when I was young every time I had episodes of intense pain I would pray "God, please make the pain go away" over and over again. And though God did not take my pain away, I still kept praying it.
I often asked "Why?" and didn't feel like He was there, but there must have been something comforting about having someone to call out to when I was afraid and alone in a bathroom stall.
I still don't understand why, if God loves me, he lets me suffer. Intellectually, I can reason it out and understand that suffering comes from a broken world, but when you're in intense pain, and you know God has the power to stop it but doesn't, it's difficult to wrap your mind around.
Faith is a struggle in this way. But in another, it's a comfort, because I believe God is suffering with me. He's not sitting there, watching, nodding passively because "this is what I deserve." He cares about what I am going through.
Another quote from the book: "I like the idea of a future world where our suffering in this life is not just unravelled, but part of what makes the new world good. It’s a restoration that builds on everything that has come before, instead of tearing down, using our brokenness for good instead of erasing it."
What do you wish Christians knew about chronic illness?
I wish more Christians knew that suffering is not a problem to be solved. Sometimes I just need someone to be there for me and to say "that sucks" instead of quoting a Bible verse or trying to figure out what past sin might have caused my condition.
What do you wish clergy knew about it?
I think clergy (and people in general) often to respond in one of two unhelpful ways to people with chronic illnesses and disabilities:
First, they may not believe the illness is as serious as the person says it is. This is especially common with invisible illnesses, and is a damaging attitude to people with conditions.
We already face disbelief from doctors, friends, acquaintances, and others, and the church is the place we are supposed to be accepted and cared for. Clergy often encourage people to volunteer, to participate in various areas of church, and, of course, to attend church.
Telling a sick person you miss them and encouraging them to come to church more often may be the opposite of helpful. It may just add guilt to their plate. Sometimes, it's difficult for a person with a chronic illness to just get out of bed in the morning, never mind shower, get dressed, eat breakfast, and leave the house.
We can't always come to you to be a part of that community, so consider ways to involve us that don't require our physical presence. With COVID-19, there has been a huge movement to online services and community that may not have been thought possible before. But now we know they are possible. I'm hopeful these communities will be kept alive after the pandemic is over for people like me.
Second, they see people with disabilities as only there to be pitied and cared for. Examples of this type of attitude: doting over them without asking if they want help first, talking over someone's head like they aren't capable of speaking for themselves, stopping by to visit without asking, etc.
Yes, I often need extra consideration, but I don't want to be pitied. If that's the attitude I receive in a church community, I probably will not stay there long, because I want to be treated like a person and not as less than human.
Can you give examples of when church made being chronically ill harder or better?
Past churches have made being chronically ill harder because health (mental and physical) simply wasn't discussed. My current church, The Hearth, is really open about health and mental illnesses. This is refreshing, because often these topics are swept under the rug in Christian communities.
At The Hearth, when you admit you are going through something difficult, the common response is "that sucks" and "me too" instead of advice, judgement, or silence. When I constantly miss services, people understand. This has made being chronically ill so much easier. The pressure and guilt I've felt in the past is not there.
With all the stories in the Bible about Jesus healing people, does that pose a particular challenge to people with chronic illness?
It's challenging because I want healing like that for myself. But it's also nice to know that Jesus did not like seeing people suffer and had compassion. That suggests he cares about my suffering now.
How are you reconciling belief in a God of love with being in pain?
I still struggle with this question because it is not philosophical for me, it is emotional. Chronic pain is frightening, and it hurts, and it's difficult, so why would someone who I'm supposed to think of as a loving parent let me experience it? No intellectual argument about free will and sin seems good enough.
I only know that Jesus experienced pain when he was on Earth, that he wanted his suffering to end, too, so I'm in good company. And I know pain doesn't have the final word. God can redeem it and good can come from it.
As I mentioned earlier, I think, when God redeems this world, that the suffering we've experienced won't just be unravelled, but part of what makes the new world good.
For more information about Super Sick, or the buy a copy, visit Mythos & Ink.