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.
