Chronic Illness and Faith: A Conversation with Allison Alexander, author of Super Sick

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.

Allison Alexander.

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.

COVID-19 and the 2007 Faith Community Pandemic Summit, or 20/20 Hindsight

In 2003, Canada was gripped by fear of the Severe Acute Respiratory Syndrome (SARS). It led to thousands being quarantined; 44 people died. It also exposed the country’s ill-prepared health-care system—and how poorly-equipped faith groups were to respond to pandemics.

In response, a few of us organized a national Faith Community Summit on Pandemic Preparedness and Response, held June 20-21, 2007 at Canadian Mennonite University.

Sponsored by the International Centre for Infectious Diseases (ICID) and CMU, with support from Mennonite Disaster Service, the Salvation Army, the Christian Reformed Church and various Mennonite groups, its goal was to help faith leaders make sure their groups were ready for when—not if—the next pandemic occurred.

Topics included spiritual care in times of pandemic; understanding pandemic; creating pandemic preparedness plans; and developing pandemic assessment and planning tools.

One of the things emphasized at the summit was the need to create a pandemic preparedness plan. This plan included creating a list of all vulnerable members of the congregation who might be in special need during a pandemic; identifying the healthcare professionals and spiritual caregivers in the congregation who might be able to assist; developing ways to collaborate with local health and government authorities and other nearby places of worship or community groups; planning for who might take over if pastors and church staff fall ill; and thinking about ways to offer services online and collect donations.

One result of the summit was a resource for churches called Beyond Our Fears: Following Jesus in Times of Crisis. Published by MennoMedia, today it is available for free as a PDF download.

The summit was a success. But like many things in life, people soon forgot about SARS and about preparing for future pandemics.

And now here we are. Today most places of worship are scrambling to come up with online service options, finding ways to quickly set up structures and systems to care for vulnerable members, and thinking about new ways to pass the collection plate.

As we all know, hindsight is 20/20. Which is maybe why this pandemic, when it passes, might be a catalyst for doing things differently in the future.

In other words, when COVID-19 is over, we will need another pandemic conference. Anyone want to plan it?

Visit the Pandemic Summit web page on the Wayback Machine. Click here to get a free copy of Beyond Our Fears (PDF). 

Why So Little Attention Paid to Religion During Elections? Two Scholars Weigh In.

The best thing about being a religion reporter is being able to interview smart people like Kevin Flatt and John Stackhouse, like I did when I recently asked them for reflections on why religion is getting so little attention from the political parties during this election (2019).

The worst thing about it is not being able to use all the great information they give me—like with my Oct. 12 Free Press column about the lack of attention being paid to religion in the current election. So I’ve reprinted here what they shared with me on that topic. Enjoy!

Kevin is an Associate Professor of History and Department Chair, History, Politics, and International Studies, at Redeemer University College.

John is Samuel J. Mikolaski Professor of Religious Studies & Dean of Faculty Development at Crandall University.

First up, thoughts from Kevin about why we aren’t hearing much about religion during this election. Could it be partly the fault of the media?

“First, one of the main factors shaping news coverage is the attitudes and inclinations of journalists, who, as a group, tend to be fairly irreligious and rather uncomfortable with overt displays of religion in political arena, especially conservative Christianity (Protestant or Catholic), which is the variety most likely to be politically significant in Canada.

“In fact, on average, journalists are one of the most politically and socially liberal groups in Canada, and one of the least religious, which shapes what they collectively see as important and worthy of attention, and whether religious elements in politics are framed negatively or positively.

“This is turn shapes the views of the electorate and the messaging of politicians with a net effect of suppressing overt discussion of issues linked to religion and a ‘closeting’ of any conservative religious views that might have political implications.

“(Witness all of the suspicion directed at Scheer for his views on moral issues, the relative silence about Trudeau's politically inert progressive Catholicism, and May's embarrassed backtracking after she mentioned Jesus in an interview.)

“Scheer's views raise red flags for journalists, but Trudeau and May get free passes, as does Singh, for somewhat different reasons.

“For some empirical research on these topics, see David M. Haskell's book, 

Through a Glass Darkly: How the News Media Perceive and Portray Evangelicals (Clements Academic, 2009) The book is now a decade old, but I'd bet good money that the main findings would still apply today. Similar conclusions have been reached by research in the U.S.

“Second, there are certainly fewer religiously active Canadians today than in, say, the 1950s, and partly as a result we don't see religion functioning as a kind of politically potent identity group the way it did a century ago in Protestant-Catholic tensions (which overlapped with English-French tensions) and resulted in a tendency for Protestants and Catholics to align along party lines.

“Other identities—region, language, urban/rural, immigrants vs. native-born, economic situation, education level—generally seem to be more important when it comes to many political issues.

“Third, it would be a mistake, however, to conclude that religion is irrelevant in Canadian politics.

“For one thing, the religiously unaffiliated (especially atheists) are in fact a ‘religious group,’ in the sense that their worldview and values affect their political choices just as is the case for Canadians engaged in a traditional religion.

“Political choices typically come down to being choices about values, and the hierarchy of values; thus, since worldviews (whether religious or secular) shape people's values they will always be politically relevant.

“This is especially so when it comes to explicitly religious issues: you can bet that religion is playing an important role in provincial politics in Quebec right now, for example, with religious minorities alienated from the governing party by Bill 21 and the deeply secular majority energized.

“But it is also true for other issues where there are deep worldview-based divides in the Canadian electorate: abortion, some sexuality issues, educational choice and parental rights, etc.

“Again, the true range of opinions and depth of disagreement among the electorate on these issues is often obscured by the high level of secular-progressive consensus among most mainstream journalists (on this, see Jonathan Kay's recent piece on the lack of substantive discussion of abortion in Canadian elections).

“This mutes the political effect of such divisions and drives it underground, but does not eliminate it. And the right confluence of circumstances can bring it to the fore.

“Fourth, my impression is that religion has actually become a stronger driver of partisan alignment in recent decades. John Stackhouse says evangelicals and conservative Catholics don't agree even among themselves on many political issues, and that is true. But they agree more than they used to, both within these groups and between them.

“Research done by the Evangelical Fellowship in the 1990s found that the distribution of the evangelical vote across the parties was not that different from the general vote distribution, albeit with a slight conservative lean.

“But more recent research seems to suggest that conservative religious views are now a much stronger predictor of voting Conservative, and religious non-affiliation a stronger predictor of voting for left-leaning or progressive parties.

“This may reflect a consolidation of views among evangelicals and conservative Catholics, but I think more likely it reflects the fact that since the 1990s that Liberals have taken harder and harder progressive lines on several social issues.

"In the 1990s, you had pro-life Liberal MPs and Liberal MPs (and leaders) opposed to same-sex marriage; today, neither of these views are even acceptable in the party, and in the past few years Liberal governments seem to have been working to eliminate such views from respectable society at large (e.g. the Canada Summer Jobs debacle, the Wynne sex-ed curriculum in Ontario).

“And of course the NDP takes an equally hard line on these issues (the Greens have been a bit more gentle, though their preferences are clear).

"I’ve heard from many evangelical and Catholic voters, who used to vote Liberal or NDP . . .  that they feel like the only party that where they would even be welcome as supporters is the Conservatives. This isn't so much because they prefer the Conservatives in terms of fiscal policy, health care, etc., but because of rhetoric and policies related to abortion, education, identity issues, etc.

“Again, something quite similar has happened in the US with Republicans and Democrats, though there of course are other things going on there that don't apply in Canada.

“Fifth, and finally, given that immigrants to Canada tend to be much more religiously committed than other Canadians (interestingly, a plurality of them are Christians, typically with quite conservative religious views), and large-scale immigration seems likely to continue and probably increase for the foreseeable future, there is going to be a potential for religious dynamics to play an important political role in our large urban centres.

“This is anecdotal, but I've heard that enrollment at private Muslim and Christian schools in the Toronto area has skyrocketed since the Wynne sex-ed curriculum was introduced into the public schools (subsequently largely kept in place by Ford's government).

“Folks who are willing to make the major financial sacrifices to put their kids into private schools that reflect their religious values because they feel unwelcome in the public schools are also at least potentially willing to have those values shape their voting patterns. This may be a significant political liability for the Liberals and NDP moving forward, though it would be a very tricky thing for the Conservatives to capitalize on it.”

Next up, John suggesting another reason religion gets so little attention at voting time is because there isn't a religious bloc politicians need to cater to. 

“Religion isn’t discussed by politicians in Canada . . . not because it doesn’t matter, but because it does.

"It matters in two respects, in fact.

“First, religion matters to religious people, of which there is a significant minority in Canada, but different sorts of religious people want different things from politics and political parties, including people within the same religious traditions.

“For instance, churchgoing evangelical Protestants and Catholics take their religion seriously, but have no uniform views on most key issues.

“There isn’t a single evangelical or Catholic policy position on global climate change or indigenous issues or child poverty or overstretched education and health regimes—so there’s literally no point mentioning them or appealing to them as blocs, since they aren’t blocs.

“Second, religion matters to nonreligious people because many of them fear that religious people are fanatics determined to force everyone else to conform to their peculiar preferences, whether shariah or dominionism or conservative Catholicism or whatever.

“Therefore, since there is nothing to be gained by appealing to religious communities in toto—since they don’t agree on policy issues and therefore can’t be expected to line up with this or that party on this or that issue—there is much to be lost by appealing to one or another of them.

“(Witness how many people get jumpy whenever the Conservatives come within a mile of appealing to traditional Christians). For this reason, Canadian politicians steer clear of religion.

“I don’t think the absence of explicit religious language or appeals to religious people is a mark of secularism, or indifference, but of remarkable political pluralism within religious groups and anxiety among the non-religious.”

A Hidden Life No More? New Movie Coming About Austrian Conscientious Objector and Martyr Franz Jägerstätter

Many people know about Claus Von Stauffenberg, the German officer who led an unsuccessful plot to kill Adolf Hitler in 1944.

After the attempt failed, he and other plotters, including theologian Dietrich Bonhoeffer, were arrested and executed.

Some know about Sophie and Hans Scholl, two German university students who were motivated by their Roman Catholic beliefs to oppose the Nazis regime.

Together with some other university students, they created the White Rose movement, publishing leaflets expressing their opposition to the regime.

They were arrested by the Gestapo and executed in 1943, along with four other members of the group. 

We know about these people because of the many movies, books and documentaries that have been made (including the 2008 movie Valkyrie, with its controversial selection of actor Tom Cruise to play Von Stauffenberg.)

But scant attention has been paid to Franz Jägerstätter. But with a new movie about him by Terrance Malick coming out in December, that should change.

Jägerstätter, who was born in 1907, was an Austrian Roman Catholic who found Nazism incompatible with his Catholic faith. When he was called up to military service in 1943, he declared himself a conscientious objector—despite being warned by friends that he was throwing his life away.

As they predicted, he was arrested and thrown in prison. But he was undeterred.
From his cell, he wrote: “I can easily see that anyone who refuses to acknowledge the Nazi Folk community, and is also unwilling to comply with all the demands of its leaders, will thereby forfeit the rights and privileges offered by that nation.” 

But, he went on to say, “it is not much different with God: He who does not obey all the commandments set forth by him and his Church, and who is not ready to undergo sacrifices and to fight for his kingdom either—such one loses every claim and every right under that kingdom.”

Anyone could be both a Nazi and a Christian, he added, “would be a great magician . . . I, for one, cannot do so. And I definitely prefer to relinquish my rights under the Third Reich and thus make sure of deserving the rights granted under the kingdom of God.”

On August 9, 1943, Jägerstätter was executed—beheaded—leaving behind a wife and three children. He was 36 years-old.

In June, 2007, the Vatican declared him a martyr. On October 26 that same year he was beatified in Linz, Austria. His feast day is May 21.

Jägerstätter's comments, written from his prison cell long ago, still speak to people today about the need to take stands against repressive and tyrannical governments—and their wars. 

“Just as the man who thinks only of this world does everything possible to make life here easier and better, so must we, too, who believe in the eternal Kingdom, risk everything in order to receive a great reward there,” he wrote.

"Just as those who believe in National Socialism tell themselves that their struggle is for survival, so must we, too, convince ourselves that our struggle is for the eternal Kingdom. But with this difference: We need no rifles or pistols for our battle, but instead, spiritual weapons—and the foremost among these is prayer.”

More information about A Hidden Life, Terrance Malick’s movie about Franz Jägerstätter can be found here.