As I know the power obedience has of making things easy which seem impossible, my will submits with good grace, although nature seems greatly distressed, for God has not given me such strength as to bear, without repugnance, the constant struggle against illness while performing many different duties. May He, Who has helped me in other more difficult matters, aid me with His grace in this, for I trust in His mercy.
– Saint Teresa of Avila, from the Preface to The Interior Castle.
A reflection by Penny.
If you type the words ‘Chronic Fatigue Syndrome’ into a stock images website, chances are it will bring up pictures that look like this:
When in fact, it looks more like this:
(note compression sleeves on my arms to help keep my blood circulating – reduces risk of fainting)
(light intolerance is one of the symptoms of CFS, so I spend most of my time in the dark)
(photo taken by my mother last month, after I lost 13 pounds in a week because I was too sick to feed myself and made an emergency trip home to stay with her.)
This is ‘moderate’ CFS – meaning that I’m still able, sometimes, to leave my bed for work, grocery shopping, or Mass. (Severe CFS involves paralysis, tube-feeding, and sometimes death. This is the disease still derisively labelled ‘yuppie flu’ by the media, and which many doctors, including two that I’ve encountered personally, diagnose as a form of hysteria solely because most sufferers are women. I could rant for days about sexism in medicine, but I’ll limit myself to one observation: in basically every case I’ve heard of, including my own, this condition starts with a viral infection that gets worse instead of better over time. It’s an illness. It exists.)
On good days I can get up and do a couple of things, provided I pace myself. Mostly, though, I’m in bed, listening to podcasts at minimum volume in the dark and occasionally trying to sit up for a few minutes at a time. If you’re wondering why the blog’s been low on activity this year, that’s why! Theresa has done yeoman’s work keeping our social media active and answering emails without the usual level of support from me, and I want to express my admiration for the extra effort that she’s been putting in to do so. If you’d like to submit content for the blog, PLEASE DO – we still need your generous contributions to keep the website interactive and would love to hear from you! Please just be aware that it may take me a while to respond, and that the delay doesn’t mean lack of appreciation!
So, why am I writing all of this?
At Easter this year, too unwell to go out to the Vigil, I stayed home and watched an old black-and-white film called The Miracle of Saint Thérèse. In one scene that particularly struck me, Thérèse is struggling to climb up a flight of stairs in her Carmel, gasping with the effort and pulling herself slowly hand-over-hand up the bannister. I felt that viscerally, because it’s exactly what I have to do when confronted with a staircase these days. (Before I got sick two years ago, by contrast, I was a martial arts student who did high-intensity training several times a week.)
It got me thinking again about illness, and its role in spiritual life. So many saints, especially women, became seriously ill in their teens or twenties and lived through years of disability and suffering: of those whose lives I’ve been listening to on audiobook recently, Saint Bernadette died at thirty-five, Saint Faustina at thirty-three, Saint Elizabeth of the Trinity at twenty-six, and Saint Thérèse herself at twenty-four. Little Nellie of Holy God, to whose biography I’m currently listening, made it – spoiler alert! – to the grand old age of four.
I’m not a saint who can bear illness the way they could – if they’d had blogs in the nineteenth century, I can’t imagine Saint Thérèse getting on one to vent about sexist doctors, for example – but I can still take them as my examples and learn important lessons from the way they carried themselves in suffering.
1) Don’t assume you’re being punished by God. Same as when you have to leave religious life, or any other dream falls apart: it’s not a personal failure on your part, or a sign that He has rejected you. As a consequence of the Fall, we live in a world where we’re surrounded by viruses, toxins, dangerous people and animals, sheer drops and large, fast-moving objects, and eventually something’s going to smack into the just and the unjust alike. Illness is impersonal; don’t take it personally. As I know from experience, blaming yourself for drawing down God’s punishment by your actions is the very best way to learn to fear and resent Him. He’s with you while you’re struggling, helping you to live through it.
2) Don’t overthink things and start denying your own experience. I’m not really that sick – I don’t need to rest. (Yes, you probably do.) Maybe I’m subconsciously making myself sick because I’m afraid of life. (You’ve read too much pop psychology.) I need to restrict myself to healthy foods, and if I eat that slice of pizza I deserve to stay sick. I need to try all the medicines/supplements/treatment programs/etc I read about on the Internet, or I’m not really trying to get well again. Maybe I’m just milking my illness to get out of things. Maybe I’m being lazy. Maybe I’m just being dramatic about the effect this is having on me.
The saints didn’t do that. They were honest about the fact that they were suffering terribly – think of Saint Thérèse warning her sisters never to leave a full medicine bottle within the reach of someone in pain, or Saint Bernadette wondering aloud how she hadn’t died yet – and they did what they could each day. Some days Thérèse could write, and on those days, she wrote. Other days, she couldn’t, and she offered up to God the frustrations that came with that. Some days you’ll be able to do things. Other days, you won’t. That’s okay, and you’re okay.
3) DO figure out ways to make your life easier. My go-to meal is a double handful of mung beans and ripped-up bean shoots dumped straight from their containers into a bowl, with low-FODMAP chicken or beef stock in hot water poured over the top to make a healthy soup. Preparation time: about thirty seconds. If you have days where your arms aren’t strong enough to use a spoon, try pre-puréed fruits and soups in sachets; cut off the corners and suck them. Keep a bag of nuts beside your bed so that you have something to ease your hunger if you can’t get up. Cook lots of chopped potatoes and mincemeat on a good day, and store individual portions in the freezer to heat when you need them (they go well in the mung-bean soup to bulk it up).
4) DO figure out how to adapt your prayer life to your energy level as well. If you say the Rosary, there are plenty of versions on YouTube that you can listen to and follow along with while you’re lying still in bed. This one’s my favourite: a basic, no-frills version without music (I love music, but now it often hurts my ears), and it doesn’t name the Mysteries so you can use the same recording every day. https://www.youtube.com/watch?v=MjDZeB7DfCo
If you pray the Office, you can download the Laudate app, open up whichever Hour you want to say, and have a screen-reader read it aloud while you listen. (I use the free @Voice Aloud Reader from Google Play, which has a bunch of different voices from which to choose. I like the sophisticated English lady. You can also adjust pitch and reading speed to suit your own preference.) Also, when you get tired of computer voices, there’s an app with a recording of Dominican friars singing Night Prayer in English for each night of the year: just type ‘Dominican Compline’ into Google Play and it will come up.
Basically any prayer you can think of, from the Holy Cloak Novena to Saint Joseph to the Divine Mercy Chaplet to the Golden Arrow Prayer, is available in spoken form on YouTube. Or, on a good day, you can record it yourself and then save it to play back in the future on not-so-good days. On days when the exhaustion and brain fog are so severe that you can’t even remember the words of the Hail Mary (trust me, I’ve been there), this is a gentle, no-pressure way to pray.
Audiobooks on YouTube are a great resource for filling the long, long hours alone in bed – my spiritual life has deepened immensely from the things I’ve learnt on days when I was too sick to read or watch a movie, and they’re basically now my primary way of staying close to God. Even if you’re not unwell but just want something to listen to on the commute to work, these are good resources. Here are some of my favourite channels:
The Priory Librarian: https://www.youtube.com/channel/UCxMQn7rjBwqRGkf2gV1jP5A
(A friar, almost certainly a Dominican based on the number of OP books in his library, who reads edifying books aloud in his soft, slightly gravelly voice. You’ve got books by Louis de Montfort, Thomas Aquinas, G.K. Chesterton, and some of the mediaeval mystics, among others.)
Sensus Fidelium: https://www.youtube.com/user/onearmsteve4192
(Orthodox Catholic talks on numerous topics, from lives of Saints to end-times prophecies and the state of the Church. You’re asked to say three Hail Marys for the priest who delivers each talk you listen to.)
Classic Catholic Audiobooks: https://www.youtube.com/channel/UCfXTzdNin8U8aEQVMIXiRog/videos
(From Julian of Norwich to Saint Francis de Sales, there are numerous books available, read aloud by volunteers from around the world. Some volunteers are much better readers than others, but it’s a great resource overall.)
Sacred Heart Publications: excellent Catholic talks on holiness, as well as audiobooks: https://www.youtube.com/user/MultiBurtons
There are also lots of Catholic books on Google Play quite cheaply (I got a book by Saint Alphonsus Liguori for a couple of dollars) that you can then use the Google Books inbuilt screen-reader to read aloud for you. It’s more annoying than a human voice, but not impossibly so.
Finally, there are television Masses uploaded online every day (you can type ‘Catholic Mass today’ into YouTube if you’re too sick to go out to church), and also live-streamed Perpetual Adoration here: https://www.youtube.com/watch?v=m4A6RIOwC2E
Basically, it can be done: there are numerous cheap or free resources out there to help your soul to grow in faith, hope and love in times of illness. I no longer feel as though I’m rotting away in the dark, because I know my heart is hearing and responding to God, and prayer connects me to the world outside my room. In effect, this solitude has become the cloister I once sought in the convent, and the stillness has become a source of contemplation. I would love to be well: to go back to work properly, to resume my studies, to get my brown belt in karate, and to carry on with the life I was living before my illness took all of that away. And yet, being torn out of my ordinary life and compelled to live with God in solitude has given me more graces than I could ever have imagined, and I can share the fruits of those graces with others by my prayers even if I don’t live among them much anymore.
It isn’t easy, but He is here. And for as long as He wills it, so am I.
Thank you for sharing! Sending some prayers your way, for God to sustain you and to heal you in His Time!
Thank you for your prayers, Rosemary! They’re very much appreciated!
While I’ve never entered a monastery, I have a vocation to the eremitic life, confirmed by two priestly spiritual directors. I’ve also had FMS + other major illnesses for 40+ years. Many days, I’m afraid to try to walk.. If I fall, I can’t get up. I really understand what it’s like to have yr life ripped away; We had two babies under 15-20 mos. Our younger son was 6 mos when I went down w a virus …. I have had periods of remission, but they’re a long time gone …
I’m trying, every day, to be more faithful, to pray my WWII. combatants brevity. Some days, I’m able. Some months, I’m not. I’m currently ill w cirrhosis of the liver & congestion of the Spleen. Not from alcohol. Nor did I eat huge amounts of carbs. We’ve concluded something in my genetic code went awry.
My daytime is at night & I sleep, when I can sleep, during the day. I may go 3+ days w less than 3 or 4 hrs of sleep. & brain fog + peripheral neuropathy can add to the whole mess.
However, I find myself closer to Jesus & Mary & the Saints, every day.
Pain is a constant. High doses of Morphine appear to have triggered the current liver issue. The holy souls are in need of prayer + family & friends.
My heart is with you.
Thank you for sharing the links, as well. May God create in you, a Garden, where He may walk in the cool of the day….
You’re carrying a lot of crosses, and bearing them with great love for God. Thank you so much for sharing your experiences and your faith!
Since I wrote the article above, I’ve found an audiobook on YouTube about the importance of sickness as an apostolate, even a vocation, in its own right. I thought you might find it spiritually helpful too. It’s called “Sufferings Sanctified, That in All Things God May Be Glorified” and it’s published by Classic Catholic Audiobooks. For some reason, the link won’t work when I post it here, but you can find it by searching for the title on YouTube!
This was an inspiring piece, Penny. Thank you so much! I really relate to what you say about the temptation to minimise our sufferings. Praying for you.
Thank you, Belle!
Thank you so very much for sharing this! I especially need it as Lent is approaching. I have fibromyalgia and had to stop working because of it, now I am at home and make rosaries when I am able. so much of what you describe pertains to my illness as well especially the part about people not understanding. I went to a doctor one time and he wanted to give me pills to take which I didn’t want to take so he asked me how I get through the pain. I told him I meditate on Jesus on the cross and offer my pain for him. He called the psychiatrist in the room. True story! So to hear another Person who suffers from chronic illness turning to prayer is what I needed to hear today! Thank you and God bless you!