Neuro-atypical Muslims Speak: What Ramadhan is Like for People with Debilitating Medical Conditions
By Mohani Niza
Publication: Muslim World Today
Date of publication: 27th May 2018
Just before Ramadhan 2015, Noor Amoruso Al-Khaled, now 34, from Oregon, US, published a poster on Tumblr which captured the interest of fellow Muslims worldwide. It was titled ‘Shout-out to Neuro-atypical Muslims’ and listed a compassionate message to Muslims living with mental and behavioural disorders to treat themselves gently during the fasting month.
Some of her messages read: “Shout-out to Muslims with mental health issues who are told they need prayer, or that their issues are caused by a lack of faith”; “shout-out to Muslims with eating disorders that get triggered during Ramadhan”; “shout-out to Muslims with ADD who struggle to perform prayers, night prayers, read the Qur’an, etc. Muslims with depression who sometimes find it hard to get out of bed and do the obligatory prayers or go to the mosque”. Her poster ended with the message: “You are valid. Your Islam is valid. And you are Allah' s beautiful creations”.
The poster is widely circulated around the internet until today. Al-Khaled is neuro-atypical herself as she lives with autism, psychosis, anorexia and diabetes. She is unable to work because of her disabilities. Being neuro-atypical means living outside what the mainstream society defines as ‘normal’ on the health spectrum, and this includes living with various disorders such as mood, anxiety, dissociative, psychotic, personality, and eating disorders.
“I thought the poster might get likes from some of my friends and that’s it,” Al-Khaled said. “The response has been very positive. So many people have messaged me their thanks and sent love and appreciation for it.”
Islam allows those who are ill to not fast. The Qur’an chapter Al-Baqarah 2:185 reads:
“The month of Ramadhan [is that] in which was revealed the Qur'an, a guidance for the people and clear proofs of guidance and criterion. So whoever sights [the new moon of] the month, let him fast it; and whoever is ill or on a journey - then an equal number of other days. Allah intends for you ease and does not intend for you hardship and [wants] for you to complete the period and to glorify Allah for that [to] which He has guided you; and perhaps you will be grateful” - (Sahih International).
Al-Khaled is among those who has had to give up fasting, saying: “I already can’t fast due to the diabetes but the eating disorder kind of adds to that. The focus on fasting as a means of purifying really adds to my unhealthy relationship with food in general. Instead of fasting, I give up other things, such as favorite foods and spend most of my day in prayer and reading the Qur’an."
She is not alone.
Angela McKee, 41, a stay-at-home mom and recent Muslim convert from South Carolina, also shares the same experience. McKee lives with borderline personality disorder (BPD), bipolar and attention deficit hyperactivity disorder (ADHD). She said: “I’m not fasting due to my medications. I’ve given up meat for Ramadhan instead and donating what I can to a local food bank. I am in a depressive episode right now so fasting will make my blood sugar drop and make me worse. Also, the medications make me very thirsty so I have to drink all day.”
For some, poverty and single-motherhood compound the problem further.
Stephie Fehr, 42, a former law academic from the UK who now lives in Cologne, Germany, said: “I had to leave the UK when becoming homeless with my then 3-year-old. To get a bit of a rest, I decided to do legal practitioner training here whilst setting up a business and writing a book. Soon after starting the training I became very ill, so that I could suddenly not do any more work, sport or decent childcare. After one-and-a-half years, I was diagnosed with fibromyalgia and chronic fatigue syndrome.”
“Fasting is not an option, because I can barely get through a day even with food and drink. I regularly faint from exhaustion and pain, only doing the necessary childcare and otherwise resting in bed,” she said.
Taylor Steen, 23 years old, said: “I have depression and an anxiety disorder. I had post-traumatic stress disorder for a while, and I did struggle with thoughts of self-harm or suicide. It’s been maybe a month or so since I’ve prayed. It’s hard to convince myself to shower, let alone pray. I feel the guilt and feel the desire, but my mind and body just won’t match up."
Dina Bdaiwi, from Irvine, California, too admits that Ramadhan is particularly challenging. She has depression, anxiety, suicidal ideation and eating disorders. Despite wanting so badly to fast on a constant basis, Bdaiwi is unable to do so because she has to take her medications at certain times.
She said: “My moods swing even more without regular consumption of food. I get really irritable but I never realized when I was younger that it was because of my mood disorder. And literally, fasting makes me feel like I’m going to be skinny again and that I have a socially acceptable excuse to not eat and thus I want to take advantage of fasting. But because I faint really easily I’ve been fasting one day yes, one day no or as I see fit for that day. Some days are harder than others. Like really trying to take it easy with myself instead of pressuring my mind and body to go through something that I cannot handle that day."
A 35-year-old industry manager from Qatar who only wants to be known as Nora was diagnosed with bipolar disorder in 2013. For her, Ramadhan is when her relationship with God is severely tested. She said: “I'm going through an agnostic phase again but I remember how into the faith and devout I was a few years ago. I never linked it with my disorder, I just thought that I'm a bad Muslim who rebels against the faith on occasions then repents, then forgets and rebels again.”
“My faith is cyclical. I have years where I diligently practice my faith, the obligatory and non-obligatory prayers, fast during Ramadhan and other voluntary days where possible, as well as give alms and so forth. Then there are years where I would struggle to believe in the existence of God,” she said.
Anne Ahmad, a social media editor from Kuala Lumpur, Malaysia, 31, also speaks of such a test. “I spent the entirety of my twenties being depressed and seriously suicidal. I can say with conviction that 2017 was the first year in my entire life that I didn't get suicidal thoughts at all, something I still cherish until today.”
“In 2017, Ramadhan was significantly better for me compared to the previous years. I established a relationship with Allah and it gave me a sense of stability and peace. However, I would say this year, up to now, the first week of Ramadhan, it had been tough on me, physically, mentally and emotionally. I guess because I was not in the mind-set to welcome Ramadhan, my physical and mental health are suffering greatly. I had been unwell in the first week of Ramadhan and felt pressured to continue my fasting anyway. I have grown to be bitter about having to fast and don't quite see the point of suffering further than I have. However, I am powering through and have hope that my condition will get better,” she said.
“I feel distant from Allah. Like, in this holy month where your rewards are multiplied for every good deed, here I am struggling with even the basics. Every day, I got more ashamed of my own shortcomings, with Allah. Why can't I be like the other Muslims? This keeps me up at night. I have resorted to only fasting half a day on some days and increasing my other good deeds besides praying, such as giving alms, being kind, thinking of God whenever I can, in hopes that maybe, maybe it counts that I tried,” Ahmad said.
Judgement and discrimination from fellow Muslims
Some Muslims like Ahmad have received support, from both Muslims and non-Muslims alike, in their struggle.
“Some of my friends, Muslim or not, have been really supportive. They don't pass judgment and try to comfort me as much as they can,” she said.
“For example, my non-Muslim colleagues are always sympathetic of my physical condition and always try to be nice, hold my hand when I get too cold in the office, even urging me to leave work early to accommodate my suffering. Some of my Muslim friends, when I tell them of my doubt in my relationship with God, try to be understanding and relentlessly give comforting advice,” Ahmad said.
But other Muslims have it tough. Many respondents said they have felt judged by the Muslim community for not being able to be the “perfect Muslim” during Ramadhan.
Catriona Rodges-Murray, 31, a former clinician from Detroit who worked with autistic children, has been living with major depressive disorder (MDD) since the death of her father when she was 13. She is able to fast fully, but struggles with making the 5 prayers everyday and waking up for the meal before dawn.
“The community other than my mosque leader doesn't know I have MDD because I've kept it under wraps because of how stigmatized mental illness is in Arab cultures,” she said.
The lack of disability-friendly facilities in Muslim spaces can also pose a problem.
A research engineer, 34, from Buffalo, New York, who only wants to be known as Maria, said: “I have been having an autoimmune disease for the past two years. This means that I am unable to perform the physical prayer and need to sit in a chair to do it. This can be a problem since I am young-ish and do not look disabled so I have had issues being able to bring in a chair and have been told to get off the chair or otherwise shamed. Many Muslim-community events such as religious discussions, lessons and meals, are eaten on the floor so this also presents a problem. Climbing stairs is an issue. Many times, the sisters’ section in mosques are upstairs. This can be an issue to me. Most mosques are not handicap accessible, especially at the women’s sections,” she said.
She added: “Ramadhan makes it especially hard since it seems to make the Muslim community feel the need to be more vigilant about their practices and broadcast their accomplishments more on social media. Since the mosques are more crowded during this time, it doesn't feel like a safe place - not that it ever feels safe exactly."
What is the solution?
All of the interviewees agree that the Muslim community should be more understanding of their neuro-atypical Muslim brothers and sisters.
“Being religious isn’t linear and it definitely has its ups and downs. I forget to remember that sometimes, especially how some people act pretending it’s all or nothing all the time,” Steen said.
Teresa Phillips Barros, 53, a clinical research associate in California who has depression and adult ADD, said: “I think we need to start some type of support groups in mosques. We also need to educate neuro-atypical Muslims on mental illness. They need to know that we are actually extremely brilliant individuals. With ADD we can utilize both sides of our brain thus that is why our minds are constantly on the go. We aren’t crazy, we just have brilliant minds."
Leila, 23, who suffers from anxiety, has this to say to the Muslim community: “People shouldn’t feel shame about having to modify their fast or not fasting at all - whether if it’s for any health reason or if they just don’t like fasting. After all, Ramadhan is a time for self-reflection and personal spiritual growth, not for meddling in the business of other people’s Ramadhan routines.”