I’ve been a reader of Tanya Marlow’s work for years and have always appreciated her great compassion and grace in the middle of difficult circumstances. Through the magic of the internet, I’ve gotten a chance to know her across an ocean, which has only deepened my respect for her.
Tanya is a relentless advocate for those with disabilities, even as she continues to struggle with her own chronic illness.
I caught up with Tanya to talk about chronic illness and faith. Listen in (and catch Tanya’s British accent) or read our interview below.
Cara Strickland: Hi, Tanya. It’s so nice to speak with you today.
Tanya Marlow: Oh, it’s my pleasure.
CS: Would you start out by telling me a bit about your journey with chronic illness?
TM: Okay, sure. My story starts off as a kind of perfect, good-Christian-girl story: what a good Christian girl would aspire to when you’re in the church praying for God to bless your life, praying to live your life for God. I ended up married to a vicar, doing Christian ministry myself: student ministry and church ministry. Then I was a lecturer in Biblical Theology, training people to preach. What I most loved was helping people on the edges of faith, Christians with doubts or unbelievers who were curious about faith.
In many ways, my life was the perfect mission story, someone who was really sold out for God. And contented; I was very happy with my life. But then this chronic illness started up very insidiously. When I promised to marry Jon, I was 21 and he was 24, and we said “in sickness and in health”; I had no idea that chronic illness would shape so much of my life.
For me, it started off as a virus when I was 16 – glandular fever. (I think you call it mono in the U.S.) My health was never quite the same, but it took ten years before it developed into this full-blown illness. I discovered it when I went to the Lake District, which is a place in the north of England with lovely mountains to walk. I’d walked up a reasonably small mountain. The next day I could walk for ten minutes and then my legs collapsed, literally, beneath me. And so I thought, ‘well maybe I’ve overdone it with the walking’. I knew that something was a bit strange with my health, but after that point I could never walk properly again.
My diagnosis was myalgic encephalomyelitis, which is much easier to shorten to M.E. In the U.S. you’ll know it under the umbrella of Chronic Fatigue Syndrome, which is something I guess I might talk about in a bit because that has its own story. When I went to the doctor to say, ‘okay I’ve got this disease, what do I do about it?’ at first, the advice was the worst I could possibly have got. They told me to exercise and that should sort it all out. Every time I exercised, I got worse until I really was very limited in my walking and I had to use a wheelchair.
I was in my 20s and had suddenly become a wheelchair user, only able to work part-time. It was such a shock to the system to transform from someone who had been so fit and healthy – I was running three miles or five miles, three times a week – to someone who couldn’t walk. That’s how quickly it can turn. One day and all my mobility was gone.
I got worse in 2010 when I gave birth to a beautiful baby boy. The strain of labor was just too much for my body to cope with. Although we knew it was a risk, that I might get worse, we just hadn’t figured how permanent that would be. Since that time, the past six and a half years, I have been housebound. I’m only able to leave the house for a couple of hours once a fortnight. (I think in America you don’t do fortnights, but that’s once every two weeks.)
Again, that’s how quickly it can turn. It’s one day. The day before I was pregnant and the next day I had a new baby and a new disability.
Even now I have to spend 21, 22 hours lying flat in bed. I have to ration out everything in tiny spoons, every single thing I do. Because if I don’t, then I get burning muscle pain; my brain gets completely fogged up; I can’t understand what people are saying; I can’t read; I can’t communicate. My temperature goes weird because I can’t monitor my body. I basically become like a baby. I can’t walk properly, I can’t talk properly, and I can’t regulate my own body or feed myself.
It’s a scary existence to be in, and that’s where I find myself now in my 30’s. And having gone through this journey since I caught the original illness, it’s been 20 years.
CS: I think one of the things I want to ask you next is, I know that it can sometimes be tempting for Christians to think of illness and pain as signs of God’s absence or even disfavor. I’d love to hear your thoughts on that perspective.
TM: Yeah, really good questions. Let me start with the disfavor thing because I’ve never been particularly troubled by this way of thinking, and I find this whole school of thought – that if you’re not healthy, wealthy, and happy that somehow God is displeased with you – I find that baffling because it’s so unbiblical.
As someone who used to teach the Bible – (I love the Bible) – think of every single Biblical hero. Think of Elijah, think of Abraham, think of Moses. How many of them had no struggles in their lives? No health problems, no infertility problems, no grief, no persecution? None of them had an easy life. It’s much easier to draw a correlation in the Bible between good followers of God who have suffered, than good people who haven’t.
Job is the prime example of this as a righteous man. In fact, God said the most righteous man who lived on earth at the time, who is inflicted with the most awful suffering. And there’s a lot of mystery around that – about why God allowed that suffering for Job. But the whole point of it is that while his followers were saying, you’re ill, you’ve had suffering, you’ve had bereavement, you must be cursed by God, repent of your sin, actually, God’s up there going, what are you talking about? Job is the most righteous person.
So if you are aligning yourself with Job’s followers, it’s a bit of a problematic theological position to be in. Of course, the biggest example of a righteous man who endured suffering is Jesus, God himself. [For] anyone who finds [themselves] in a place of illness or suffering or grief – any kind of hardship – you’re in good company because Job was that person, Jesus was that person, so there are good shoes that have walked that path.
Whenever I get people saying, ‘Oh! You’re ill with a chronic illness, do you have any unconfessed sin in your life?’ then I’m like, ‘Yes, do you not? Who doesn’t have unconfessed sin in their life? I’d love to meet this person!’ There are some who persist. Loads of people with chronic illness tell me that they do get people who persist in saying ‘Well, you must not be praying enough, you need more faith.’
Jennifer Rees Larcombe, a wonderful British author who also has M.E., was amazingly healed [from] it. But when she was ill, she used to have people saying, ‘Hey, there’s something wrong with your faith.’ And she would always say, ‘Hey remember the story of the paralyzed man who was healed when Jesus saw the faith of his friends who let him down through the roof? Well, that shows that a friend’s faith can heal a person. So if I’m not better, maybe you should look at your own faith.’
And that’s where I go for that side of things. But there is also a different, more pervasive myth, that if you suffer or if you have illness, that is a time of your life when God is closest to you. And so I think people look at people who have chronic illness or ongoing conditions, and go, ‘Ah well, you’re suffering but at least you have this great relationship with God and you’re really close to him.’ And the thought is, ‘Well, that makes up for all that you’re going through because you just have all this joy and fulfillment from God’. I don’t think it’s always like that.
CS: Thank you for bringing that up. That’s a good additional point. I’d like to go a little bit now, into your personal faith. Tell me a little bit about how your faith has grown and changed as you’ve had this physical struggle.
TM: (laughing) I’m giggling because it’s a lovely assumption that my faith has grown. It’s definitely changed, but I sometimes feel a spiritual fraud because of this whole myth that if you go through suffering then God is especially there for you, and if you go through illness, somehow you become a more holy person.
I still get irritable and cynical. And actually, at the worst point in my life, for the first 18 months after I gave birth, when we just didn’t know which way was up, and I was barely able to stagger to the bathroom, holding on to the wall, so isolated from other people, unable to look after myself, unable to look after my baby – and at that time all I could see was God’s absence, not his presence.
C.S. Lewis talks about shouting out to God and finding a closed door that was locked, and that’s just how it felt for me. That awareness of God’s absence, that was something I really hadn’t encountered before. In people’s testimonies, I guess they don’t invite many people up to a crowded auditorium and say, tell us about the worst time in your life and how you felt completely abandoned by God.
But I actually think there should be more stories like that because it’s really important to have the full picture. Some people when they’re suffering, they do have that closer relationship with God, but [for] other people, the suffering takes over. That’s why it’s [called] suffering.
For me, it’s been so helpful to dwell on the incarnation. That’s the part of my faith, in terms of which elements of doctrine I am drawn to now, I find myself returning to incarnation. Even when Jesus is in Gethsemane, he is struggling and sweating blood, which is something your body only does under extreme stress. I don’t really see serenity in that picture. I see struggle. I see battle. And that’s what I really relate to.
It’s been really helpful for me to look at people like Jesus and Job. That’s why I love the character Naomi in the Bible. Because everyone loves Ruth, but I really like Naomi because she’s so grumpy. She’s gone away from the promised land and then she comes back and she’s angry with God. I love the fact that there is space in the Bible and in God’s story for people who are feisty and get angry at suffering. And I think Naomi, patron saint of the grumpy, is actually the hidden hero of the book of Ruth.
It inspired me so much that that was the first book I wrote, Coming Back to God When You Feel Empty, which is a really short 30-minute-read going through the book of Ruth and interweaving some of my experiences and my perspective as someone who did come stomping back to God, as it were, after going through suffering. Oh, and it’s free! (I should mention that.) You can download it when you subscribe on http://tanyamarlow.com.
CS: Perfect. Thank you for mentioning that. One of your passions, from what I’ve seen, is advocacy for those with M.E. as well as other disabilities. What would you like to say to listeners about this group of people?
TM: Oh boy, it’s really hard to know where to start because the history of M.E is political and difficult, so I’ll do my best to explain it.
With most illnesses, even if you don’t have a cure for it, when you go to a doctor, you at least get some respect and an option of treatment, even if it’s not curative. [As] someone with M.E, by and large, you don’t get either. You don’t get respect and you don’t get any treatment. It’s a neurological autoimmune illness and over the past hundred years or so, they’ve been tracing it more. It comes often in outbreaks and it’s often triggered by viruses and there are just lots of scientists working on it from different perspectives, immunologists and biochemists and… my medical knowledge always fails at this point – all the clever scientists! They’re all working on it from different angles and they’re all finding biological abnormalities in the bodies of people with M.E.
But there is a second school of thought that says that M.E. doesn’t exist as an illness: basically denies it and says that it is a behavioral disorder where the person is afraid of exercise and it’s just down to muscle deconditioning so that I become tired. I just wish the people who are saying this could spend a day in the shoes of someone with very severe M.E.
I’m the lucky one here. I have friends [whose] life is so limited by their illness. They are in a darkened room, in constant, agonizing pain, with no relief because they can’t take anything that will help. They can’t feed themselves; they struggle to go to the toilet by themselves. And the worst thing is that their limits of overexertion are so small that they can’t even communicate with people or have people in the room with them. They can’t be touched.
This is the kind of suffering we see in AIDS patients about two weeks before they die. And I know people who have just been in this situation for decades. It is breathtakingly awful and yet so little has been done even to research or treat people with M.E. At the moment the American government gives more to male pattern baldness than it does to research in M.E.
This is a real social justice issue for Christians to get involved in because of the way that M.E. patients are either abandoned or abused by the medical community. It would be amazing to see Christians bringing about change and maybe even eradicating this disease. That would be awesome.
CS: It’s likely that most of our lives intersect with someone with a disability or chronic illness or some other mental struggle that is really difficult for them on a daily basis. What are some practical ways that you think we can be thoughtful and accommodating in our churches and our lives?
TM: Yeah, it’s ironic, isn’t it, because often churches aren’t the most accommodating places. The first thing to say is it is very likely [that our lives intersect with someone with a disability], and I think most people are surprised at how many people have a disability. The stats are almost one in five: it’s 19% of the population. Depending on statistics, that’s about three to four times as many disabled people as LGBT people in the population.
It’s important to remember that the vast majority of disabled people aren’t born that way. They develop a disability later in life, just as I did: one day where everything can change. So, in other words, if you are able-bodied right now and listening to or reading this, that poor disabled person that you’re imagining helping and accommodating could be you.
The first thing to think is: what would you want if you were in that position? Immediately it’s helpful to start with that attitude of empathy and imagination. Often we can’t tell exactly what disabled people will want. I’m one person who is disabled and I can’t speak for the whole vast disabled community. I can really only share of my own experiences and discoveries. But what I’ve really valued is people asking me what I need and how to accommodate me and how my health affects me.
Some people won’t want any help and will have their lives already managed. Some people actually could really do with help. It’s always worth asking, always worth taking that risk of saying the wrong thing, because if you do it with the right heart, that’s not a mistake. The first thing to remember is disabled people are people, so when you say what would a disabled person want from a church, it’s the same as anyone would want from a church: inclusion and community, and friendship and discipleship. Often disability can be very isolating.
Particularly with chronic illness, we expect – particularly in the West – we expect illnesses to be brief things; we expect crises to be brief things. Churches are often really good in a crisis and they’ll run around and deliver meals for someone who is having a baby, for example. But what happens when that situation goes on for a year, two years, five years, ten years? Often the help dries up and people aren’t around anymore. But actually the person with a disability or chronic illness is still in need.
It [makes] us question, what does it take for us to really be family, really be committed to loving people as our own family, particularly when they have needs? As a disabled person, I’ll give an example: I love it when my friends or small group or prayer group come into my house. I can’t go out of my house. That means sacrifice on the part of other people because if they have kids, they’re the ones who have to get the babysitters in. But because they love me and know that I can’t go out any other way, they come to me. And that’s just a small way of valuing someone in that position.
The other thing I’d say is that disabled people are people and disabled people are disabled, so there are barriers that prevent us from joining in. And sometimes those barriers are our body, but sometimes those barriers are to do with the setup.
Small things can make a difference. But the biggest thing is really seeking to connect with disabled people and not viewing them as ‘other’, because it could be you.
CS: Thank you so much for talking with me today, Tanya. It’s just been so illuminating and encouraging for me and I think it will for our listeners as well.
TM: Oh, thank you! I’m just honored to be invited.