My video interview for New Wine Conference, 2017 – on my journey of faith, chronic illness, and the silences of God
© Tanya Marlow – Profile Picture
Bio in brief:
Tanya Marlow is an author, speaker and broadcaster on faith and spirituality.
She is also a campaigner for those with chronic illness, disability and Myalgic Encephalomyelitis.
Formerly a lecturer in biblical theology, with a decade of experience in Christian ministry, she has been published by The Spectator, Relevant, Premier Christianity magazine and others. She admits to a weakness for karaoke, sunny days and laughing at her own jokes. You can find her in a vicarage in Devon, England with her husband and bouncy son, or writing honestly about finding God in hard places and the messy edges of life at www.tanyamarlow.com.
Author of Three Books:
She is the author of Those Who Wait: Finding God in disappointment, doubt and delay (Malcolm Down Publishing, 2017) – a creative and transformative journey through the lives of four Bible characters who waited impatiently – and found God in their frustrated longings. Preorder from Wordery (free worldwide delivery) or look out for the introductory offer 16-26th October on Amazon.
She is a contributor to Soul Bare – Stories of Redemption ed. Cara Sexton (IVP USA, 2016) alongside Seth Haines, Sarah Bessey, Emily P Freeman and more.
Her first book, Coming Back to God When You Feel Empty (2015), intertwines her own story with the biblical book of Ruth, offering a path back to God after disappointment and loss. (Get it for FREE here).
What do I write about?
My writing covers a whole host of topics, but circles around the spirituality of suffering:
- How do we relate to God when hard times come?
- What if God doesn’t feel near?
- Where can God be found?
- What if we are plagued with doubt?
- How does it really feel to have chronic illness?
- Where does the church fit in?
- What if we find ourselves in a wilderness or limbo state?
My background is in theology and ministry, but I have an English Literature degree, and I like to tackle these topics creatively, interweaving story and metaphor with spiritual truth.
I love exploring the Bible so it gets under your skin, ministers to your spirit, and leads you to Jesus.
Vulnerability and authenticity is a way to unlock courage in other people, so I write honestly about my life and weaknesses.
I dabble in feisty social justice, especially M.E. advocacy, rights for disabled people, and feminism.
This is a space for people who feel like they don’t belong. It is a place for doubters, lamenters, broken, disappointed, wobbly or lost – those who have seen the muck and of life and somehow still seek gold therein. This blog is for cynics and hopers, word-lovers and God-seekers. (I also habitually recommend good books and am occasionally hilariously funny*.) You are welcome here, and I’d love to get to know you more.
*honestly, I am.
Writer, Broadcaster, Campaigner:
- I write regularly for online magazines She Loves Magazine, and Mudroom (USA and worldwide). I have also written for The Spectator, Relevant Magazine.com (USA), Premier Christianity Magazine (UK), Threads (UK), and BigBible.
- I am a broadcaster who has been featured in BBC Radio 4, BBC Radio Devon, and UK’s Premier Christian Radio (audio), and Big Bible Project, BBC Spotlight, Change for ME documentary (video).
- I was the founder of Compassionate Britain, a grassroots campaign that united Christians to speak up for disabled people against the government cuts affecting their essential support. I also campaign for better treatment and funding for M.E. patients with #MEAction Network.
Background:
- I was formerly a lecturer in Biblical Theology, and Associate Director for a homiletics training course (accredited by St Mark and St John University, Plymouth, UK).
- I have had ten years’ experience as a Christian minister in both church and student ministry, and have been a speaker and preacher at national Christian conferences (Spring Harvest, New Wine, Greenbelt etc). I hold a post-graduate qualification in pastoral counselling.
My health:
- In 2007, I was diagnosed with Myalgic Encephalomyelitis, a debilitating chronic autoimmune neurological disease, which affects my mobility and energy, and comes with a plethora of annoying symptoms. You can read more about it here.
Sept 2016 – M.E. Action Protests for Better research and treatment
- In 2010, my world changed when I gave birth and my M.E. tipped over into ‘severe M.E.’ Since then I have been housebound, needing to spend approximately 21 hours per day in bed, only able to leave the house once or twice a month for a brief trip out in my wheelchair. I now measure out my life in teaspoons. I need to rest much of the day, and have to strictly ration my time talking with friends, writing, or playing with my son.
- In 2014 I was also diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), which means my body does not enjoy being upright, and my heart goes crazy when I stand up.
- Living with chronic illness has shaped and refined my theology, and made me passionate about justice for marginalised people. You can read more about my response to this in Why Thorns and Gold?
My family:
- I have an amazing husband who is a vicar (church minister) in the Church of England, and we live by the sea in Devon, UK. (NB the picture above is NOT Devon. It’s Greece…) He’s an artist, scholar, wine connoisseur, preacher-man and organiser of legendary kids’ parties. He blogs sporadically here.
- We have a small-but-loud golden-haired son whose company we enjoy immensely. To protect him from future teenage friends googling his name and finding out all the cute things he did as a toddler, I refer to him online as ‘boy’.
Wanna know even more about me? Click on my More About Me page for some fun facts.
But enough about me – what about you? Please do introduce yourself, say, hi, interact and leave a comment, tell me your story – I’d love to hear it.
Wanna keep in touch? Please do! The best way is to subscribe to my blog (unsubscribe at any time) and get your book, Coming Back to God When You Feel Empty, for FREE!
I wrote a comment earlier this week on your when God doesn’t heal piece and I have been reading more of your blog tonight. You are a very talented writer! I am happy to “meet” another woman with ME who is also the mother of a young child. Right now I really only know one other person that can understand the unique challenges of having an illness like this and being a new mom. Thank you so much for sharing so much of yourself on this blog. It cannot be easy. I have read only 4 pieces and I am already so touched and blessed.
Thank you, Holly – like you, I’m always glad to find someone else who has M.E. and is a mother. I’m really touched and glad that you found my writing so helpful. (And thank you for your lovely reply to Stacey – it all gladdens my heart!)
God bless you. I’ll let you know.
Hi Tanya,
Pleased to meet you. I am a Mum of three grown ups (my daughter is Tania), a grandmum, a wife, a writer and a soon-to-be blogger on honing your Christian testimony. (It’s launching soon. I’m amazed by how time-consuming prepping it is. )
My background is in Judaism. I came to faith in a Jerusalem church where I was not supposed to be and God began a series of Ruth-like blessings that led to my marriage to my Boaz, akna Butch (he’s a Canadian). We divide our time between UK and Canada.
I have written my Ruth story: She Does Not Fear the Snow (yes, that’s a line from Prov 31, the woman whose worth is far above rubies).
But for health investigations, for which I’ll get results next week (I’m hoping for an all-clear), the book would already have launched. I’m hoping to reschedule a date soon, after I see my consultant.
Hi Bobbie – great to meet you!
Your story sounds really interesting – and what a fab resource you are producing! Thinking of you as you await those test results – really hoping you get the all-clear.
Thanks so much for taking the time to write. X
Dearest Tanya–
Thank you so much for your time and truly heartfelt reply. I have just been so tired I haven’t been able to reply, and started to feel guilty until I remembered that you are also in a similar state and therefore had complete understanding 🙂 I have been pondering your words and I also had my husband read them so that he can realize how I am feeling and that we are not alone in this battle. I thank you so much for helping me to see the reality of the situation and how to navigate it partially. I would love to email with you if you are able. I would love to hear your journey and testimony, and have a friend who understands. Of course only as you are able, I don’t want to add to your load either. Thank you Tanya, God bless you–Stacey
No guilt!
I am so glad this was helpful to you. Will email you. X
Hello Tanya,
I am so very thankful to have found your blog. I am on the verge of diagnosis of CFS, but now in hindsight see that I have been suffering for a long time. In February after losing what would have been my 3rd little one my body crashed the hardest it ever has. I am under a doctors care, trying dietary changes/supplements, but through my own research I believe that CFS is ultimately what is going on. I am so grieved. If I were not a momma of 2 little ones, I could see the possibility of getting better through consistent rest, but I don’t know how I am going to get better with 2 little ones to take care of. Do you have any advice as a mom, in how to help myself heal in the midst of toddler chaos 🙂 ? Also, how did you finally let go…. meaning I am so driven (hence partly why I may be in this circumstance), I am a disciple of Christ, I love Him and trust Him, but I struggle in not being able to strive to accomplish all I feel I must for my family. I also am struggling with great guilt, feeling that this is not what my husband signed up for. It seems so unfair that he be required to provide for his family and me not do my part. Did you ever struggle with these feelings? …I don’t know I just feel so overwhelmed… Thank you for your time.
Oh, Stacey…I am so sorry for your suffering. I was barely pregnant with my third son when we were in a terrible accident that totaled our car and injured the four of us. First son just turned 4, 2nd son was 18 mos…they both got concussions which went undiagnosed originally but were sorted out after the baby was born. Sigh…I had twisting neck and low back injuries that were truly incapacitating, and being pregnant, was unwilling to use any medications for pain. Fortunately, I had both a wonderful chiropractor and a wonderful homeopath, and they have seen me through these long years. Not out of the woods yet, but there is more light getting in every day!
So, 13 years (and four additional personal “freak” accidents) later, I immediately related to the feelings you described. I did not have family nearby and was too new to have close friends … and long-term illness is exhausting, as people just can’t believe recovery can be so slow. I don’t have CSF, but I did wind up with chronic exhaustion, which led to my adrenals crashing. And my last accident, four years ago, resulted in a horrific concussion — which has not yet fully resolved.
If I could go back in time with what I know now, this is what I would do differently:
1–I would find a way for my husband and me to get away once a week for a couple of hours of personal time for our own relationship. The only way to do this is to ASK people for help. This is so hard for us to do, but you must do it.
2–Let go of any and all shreds of perfectionism. Your new mantra is “Good enough is BEST”! If you have not heard of FLYlady, check her out. The ritual of just 15 minutes has transformed my life. http://www.flylady.net/ DO NOT get overloaded … just sign up for the emails and focus on the theme of the month and squeeze in 15 minute items as you can. As she says: You are not behind! I don’t want you to try to catch up; I just want you to jump in where we are. O.K.?
3–Ask your husband to do FLYlady with you so the principles get imbedded in your family culture.
3–The friend who introduced me to FLYlady came to my house every weekday for almost three months and we worked together for 15 minutes on whatever project I thought up. Many times I was able to go another 15 minutes after she left — I was always happy and grateful when she left. Ask Father to give you a House Fairy, which is what I called my friend, and don’t allow yourself to be embarrassed by your circumstances. I have been able to pay this concept forward. It is a blessing for everyone involved.
4–Find a way to let go of all that guilt. You did not do this to yourself. None of your family deserves what happened. Be gentle to yourself so that your frustration doesn’t flow to the rest of the home. I know what I’m talking about here…sigh…I feel like I’m such a cranky mom most of the time. One other resource that has been helping me lately is Aha! Parenting: http://www.ahaparenting.com/parenting-tools — again, sign up for the email subscription. It is helping me so much….
5–Rest in the love of Father, Son and Spirit. You and your circumstance are know to them intimately…they are right there in the midst of it INSIDE you. Receive their love and grace and mercy one day, one hour, one moment at a time.
You are not alone. Others walk similar paths. There is hope….
Be blessed, sweet sister. I am trusting for you in Jesus….
Oh Peggy… thank you so much for hearing me, hearing my pain, and offering such voice of love and encouragement. I will look into the things you told me about… but most of all thank you for letting me know I am not alone and that someone hears my cry. Bless you–
The power of the Spirit to bring us hope and light and encouragement in the midst of our pain and darkness and despair never ceases to amaze me. There is nothing like being truly seen, truly heard, and truly understood. We do the best we can for each other, but it is our amazing Father-Son-Spirit who are always there. Sometimes they are too close for us to see and hear, or out pain darkens our senses. I pray that the eyes and ears of your heart will be tuned to the still small voice that is always saying: “Stacey, we love you. We are right here with you — and we have this mess under control. Be patient and watch us work all these threads together for good for you and your children and your husband. Don’t give up when you think you can’t stand it another second. Breathe in our Breath of Life. Exhale your fears. Know that you are enough–even when you think you have nothing.”
Baby steps, sister…baby steps are the only way to walk out of this nightmare. Be blessed….
Peggy – thank you so much for this wonderful reply!
Yes Peggy, thank you. Thank you of reminding me where to set my focus. Blessings–
Hi – lovely Stacey. I hear your overwhelmedness – I really do, and I feel for you. It is all so hard and uncertain and exhausting.
So. I will dive in to these questions, but I am aware that I don’t know you or your life, and only you will know what will be best for you and your circumstances. I will just share from my perspective.
With the illness, I have learnt (with hindsight) to ask myself, ‘what would I have to do in order to cope if my health got worse?’ and then put those changes in place BEFORE it gets worse. So, when I came home from hospital having given birth, and my health was completely crashed and I was thrashing around with the same sort of questions you are, a wise friend said to be, ‘so, you’ll need to find a nanny.’ And my reaction was, “no! I can’t have someone else looking after my kid! It’s my job! And we don’t have the money! And it’s so not what we planned or would have wanted!’ – and six months later I wasn’t better. The social services came to assess me, and I thought they might be able to suggest physical aids or stairlifts, but they were also ‘you need a nanny.’ They couldn’t pay for it, but that was still their assessment. And so we got a nanny. And that made so much difference. We found the money because we had to. Now he goes to nursery some mornings, a nanny some mornings, and mummy/daddy looking after him in the afternoons. Work out what you would need to do if you got even a title worse, and then put it in place before you get worse. If you get better, you can easily diminish the help you require – but if you ignore it and get worse, it’s much harder to put things in place.
Which leads me onto… Be honest about how ill you are and how tired you are, and don’t be afraid to ask for help – and keep asking, until you get it.
As for the guilt – I say, begone!
Sometimes I think the guilt comes from ourselves – and what we would have wanted. It’s a way of hanging on to our dreams and plans for our lives, ‘it wasn’t meant to be like this!’ Also, sometimes I think it can be a bit of a bargaining thing with God, “look God, I can’t be ill – too many people need me. So – fix it, yes?”
But you are ill, and it is not your fault. Sometimes we look at the cards in our hands and say, ‘if only I had a King of spades or an Ace, then I would win, for sure.’ – but we haven’t got those, we’ve got a bunch of sixes and fours and twos, and we just have to play the hand we’re dealt.
“I struggle to accomplish all I feel I must” – that sounds like a very big sentence with some very loaded terms, and plenty of frustration and fear wrapped up in there, too. I want to give you an extra big hug.
“This is not what my husband signed up for”. On the contrary: “for better, for worse, for richer, for poorer, in sickness and in health”. It is precisely what your husband signed up for, and what you signed up for, too. Love is not love which alters when it alteration finds (Shakespeare).
All this is really tough – and it is too great a burden to bear alone. I am praying now, that you will find good people around you who can help you as a whole family to carry all that you are carrying – the tragic loss, the illness, the busyness and madness of being a mum to two toddlers. I am sending you much love. X
Hi Stacey. I hope you will not mind if I chime in. I have ME/CFS and I have a baby – I refuse to call her a toddler until she is actually toddling! When your own body is not functioning as it is meant to and you have to care for others, it is very hard not to feel overwhelmed. I think feeling overwhelmed has to be one of the worst feelings or it is for me at least. I do not feel nearly as overwhelmed as I have before and I only say that to let you know that it will get better. I clung to that thought after I had my little one and overwhelmed seemed too mild a word to describe what I felt. I told myself it will get better several times a day and it did, with help and time. I would be more than happy to email you. I am happy to listen. I can google talk or skype instant message. I can even try and find a carrier pigeon or try to master smoke signals. 🙂 Please know you have been heard and you are not alone. My email is coach.me.cfs@gmail.com if you ever want to talk.
Holly
Thank you Holly– I just emailed you, very much looking forward to connecting with you.
so sorry to hear of your affliction, but encouraged by your passion for our King.
I am a medical doctor, in general practice, and know the limitations of what medical science can offer you. However, I have also been documenting and practicing the Lord’s word on healing for 23 years. As such, I would like to submit to you what I have, which may perhaps help you.
diet: I prescribe a diet based on Numbers 28:1 – 10, with New Testament modifications.
Simply , it goes like this: Have a high protein/Carbohydrate breakfast( before 9am) eg egg on toast.
Low protein/ High Carbohydrate lunch eg: cucumber sandwich
High protein / low carbohydrate dinner eg: fish and a salad.
Avoiding root vegetables like potato, as well as seeds like nuts and corn..as no where in the Bible are roots and seeds eaten…as distinct from grains.
This lines up with the changes in our daily gluco-steroid secretion , and maximises our ability to repair and replace our tissues while we sleep. ( healing).
The Lord gave me this diet in 1993, when my wife was in the end stage of SLE. She went into remission within three months and has been in remission since. Her atrial fibrillation and renal damage were reversed.
Since 2008, I have used this on almost 2500 patients, many of whom have some sort of inflammatory illnesses, with quite a few going into remission.
As well, I developed an exercise that releases endorphins in 80 percent of patients.
I call it the flick, you simply flick a finger , any finger, for 60 to 90 seconds until your forearm hurts. If endorphins have been released, your blood pressure and pulse rate will change before and after as if someone has given you an intravenous dose of morphine.You may already know the proposed healing properties of endorphins that researchers are finding.
I hope this may help, even as I have no doubt that you are holding on to His word.
I have also documented the miraculous, that comes from the laying on of hands.
Whichever way the Lord chosen for you, I agree with all that He has prayed before the Father and that your testimony will lead others to our King.
Thank you so much for your kindness and concern – I really appreciate it.
Tanya,
I read your story posted recently at Prodigal. My heart goes out to you. If you’ve had this condition for several years, then you’ve probably already considered diet issues. I’ve known several folks (my daughter for one) who suffered from debilitating illnesses. After doctors couldn’t help, they took matters into their own hands and did a mountain of research. My wife stumbled on the answer to my daughter’s problem–gluten intolerance–which apparently is widespread.
If you’ve already tried a change in your diet, then forgive my presumption. However, if you haven’t researched in this area, you might consider it. It will cost you nothing but some time and a simple change in how you eat.
Soli Deo Gloria,
Jim H.
Thanks so much for your concern, Jim – I’m so glad your daughter got better. It is a shame that gluten intolerance isn’t more widely investigated by doctors, isn’t it?
Blessings to you.
Hello from another Christian blogger with M.E.! Wow – small world! 🙂
So glad to have found your blog. God bless.
It’s great to have discovered your blog! Thanks for stopping by 🙂
Tanya, I just read the article you wrote for Relevant titled, “My friend is hurting, what do I say?” It was excellently written, and I think you made such a fine point of how our weeping and rejoicing are sacrificial gifts to those around us. But the reason I wanted to write you was because I noticed you said you have an autoimmune disease. I was diagnosed last year with Celiac’s, also an autoimmune disorder, so I understand to an extent what it’s like to deal with. I just wanted to pass along to you that I tried a number of things with only worsening conditions until I discovered the Paleo diet. I’ve eaten Paleo since January and can physically feel and visibly see my body improve. A great book on the topic is Practical Paleo (part information on diseased and eating Paleo and part cookbook). I have experienced first-hand how food can stop damaging our bodies and start restoring our health. I really believe you could find some relief through the Paleo diet if you haven’t already tried it. I hope this offers some bit of encouragement!
Hi Anna – I am so sorry it took me so long to reply to this – I somehow lost your comment in the midst of everything. I’m so glad that the Paleo diet has given you so much relief. I have actually been on the paleo diet for a year, but haven’t seen any improvement or relief. I’m staying on it for now because it encourages me to eat such a lot of fruit and vegetables, but it doesn’t seem to have been the boost for me that it is for others with autoimmune conditions. We’re all different, I guess. Thanks so much for thinking of me, and I’m so glad to hear that you’ve got relief from Celiac disease.
Hi, Tanya!
Do you accept guest blog posts? I write for a company that specializes in providing disabled persons with wheelchair vans and mobility accessories; and would love the chance to contribute a quality post. Keep up the awesome work:)
-janelle
Hi Janelle – thanks so much for stopping by. On this site I write about the Bible and suffering, rather than practical help for disabled people, so I think that other blogs may be more suitable.
Many thanks
Tanya
Ah, ok. Thanks for letting me know, Tanya 🙂