Muslimah’s experience of 3 years with long COVID

27^th March marked three years since I first caught COVID, resulting in a 3-year-long illness that I couldn’t have anticipated or predicted. As a nation and globally, we had a shared experience through the pandemic. Not being able to attend gatherings and working from home became the new norm, and just as quickly as we adapted to that new normal, we adapted back again as the virus eased and restrictions were lifted. Things went back to “normal”. But not for everyone. I want to highlight an aspect of the pandemic that may be hidden to many: the enduring and residual illness commonly known as “long COVID”.

For a long time, medical professionals denied that it was even a condition to begin with. Some doctors I saw in those first few months told me I was lazy (that’s why I was so fatigued?) and had anxiety (that’s why I had persistent chest pain?). As my symptoms continued into the months and then eventually the years, somewhere along the way it was recognised officially as a medical condition; as a long-term after-effect of this already unknown virus. A virus that humbled doctors, who can be notoriously arrogant in their knowledge, as they don’t have the answers to the many questions that people who suffered with long COVID had and continue to have.

Doctors still have no answers

I used to diligently log my symptoms on a daily basis, in order to inform the doctors of new symptoms I would feel or when and how they would worsen. I would sit at the end of each day and close my eyes and locate the pain and struggle that each part of my body felt, from my mind to my hands, from my feet to my heart.

But as the months eventually turned into years, I slowly stopped logging my symptoms – how they would vary in intensity and each new symptom that arose. Hardly any part of my body was pain- or symptom-free. So, slowly I just stopped. What was I logging it for? The doctors who still have no answers? The symptom list ever increasing but the treatment options few and far between, but mostly all experimental.

Now, when I think back over this 3-year period, it’s a blur to me as my memory fails me (another symptom). I try to remember every time I caught COVID again and what it felt like each time – just like a distant memory that I know happened but can’t quite grasp. I try to remember each Ramadan with its distinct features during and post-pandemic, and how I struggled to manage the most basic of tasks. I recall going through a period of intense mourning and grief (more than once) for the person I once was, not recognising the body I would wake up in.

I learnt to redirect my energy and attention from struggling to get back to who I was, to embracing and accepting who I am today, with all the limitations and blessings, by accepting Allah’s decree and accepting that this may be what I live with for my time here in the Dunya. Coming to terms with that, truly accepting that, gave me a huge amount of peace and sakīnah (tranquillity) that I used to begin my life again – with new parameters and new markers for success.

Challenges

For the first few months after continuously feeling unwell, the things I was told by the doctors I saw really made me begin to question myself.

“Was I just being lazy? Was all this just in my head? Could anxiety cause all that I was feeling physically? I began to doubt myself.”

It was only after I found an online support group, full of thousands of people from all over the world who had experienced the same as me, that I began to feel validation. I could confirm to myself that it wasn’t just in my head, despite what the doctors said. It took the doctors a long time to catch up, and it would have been much longer, had doctors and researchers not also been amongst those suffering with long COVID.

“He knows whilst we know not”

This virus has humbled the medical profession. To this day, they don’t have the answers to how long it will last, if there’s any long-lasting impact, or what the solution to this may be.

All this only reinforces my īmān and trust in Allah, that He knows whilst we know not.

We know this statement to be true, but across our lives we often like to believe we know, and that we are in control. But this virus reminded us that we are not. Allah has control over the dominion of the Heavens and Earth and these tests come to us as reminders of that.

Concealed illness is a hidden blessing

Another thing that has made all of this harder, is that the illness is invisible. The pain is beneath the surface, and no-one truly knows or understands it unless they have experienced it, too (or suffer with similar invisible chronic conditions).

You find yourself having to explain your stuttering, or having to explain why you can’t remember the last conversation you had with someone. Or you find yourself being told you “look well” and “great” and you “must be feeling better now”. And instead of saying “no”, you just respond with a smile and “alhamdulillah”.

I think it’s a blessing that Allah chose this illness for me in this way. It isn’t one that people can see and so I struggle with it in the privacy of my home, hoping for the reward from Allah for being patient with it. I sometimes feel guilty even mentioning my condition to others, in the hope that they can try and understand, but then worry it is a form of complaining or being ungrateful. The thing is, I truly am grateful to Allah for this ailment, that I am in need of its purification, if Allah accepts it from me.

It was narrated by Abu Sa’īd al-Khudri and Abu Hurayrah (radiy Allāhu ‘anhum) that the the Prophet (ﷺ) said,

“No fatigue, nor disease, nor sorrow, nor sadness, nor hurt, nor distress befalls a Muslim, even if it were the prick he receives from a thorn, but that Allah expiates some of his sins for that.” [1]

I wake up each day not knowing how badly my body will fail me. It is constantly in fight-or-flight mode and high alert, and sleep no longer brings restoration or recovery. I try and make my way through each day, half functioning as best I can. Choosing between taking that phone call or making some breakfast. Or leaving the house or taking a shower. And knowing if I do both, I will suffer even more. Choices I’d never have to make before, in a way it has forced me to be mindful of each action I take. To take each thing in front of me and only do that until I can’t anymore.

Through this journey, I am sure I have let many people down, not being there for them as much as I would have liked or intended. And through that, I’ve lost some friends that I was once closer to. Loss comes in different forms and all forms are a test from Allah. But I also believe Allah places people in your life at different times for different reasons and not all of those people remain in your life for the duration of it.

Blessings

Having said that, on the other side are those individuals, strangers, and friends whom Allah has sent to aid me through those difficult moments in this journey.

From a kind doctor or nurse at a particular appointment listening intently to my list of concerns, to a righteous friend who checked in without prompting, who remembers you in their du’ā. Many of whom were not even neighbours but from far away, they sent their love and gestures of kindness.

These blessings are far too many to count, but they are like glimmers of light in a very dark tunnel, guiding you through the long passage. These last three years have been marred and blessed with an invisible illness.

A crown visible only to the ill

They say,

“Good health is a crown on the head of a well person that only a sick person can see.”

And that crown is worn by many, but how many of us take it for granted?

That’s probably one of the main reflections I’ve had, all the health and abilities Allah had blessed me with, but I had taken them for granted.

The ability to breathe properly without thinking about each breath. The ability to think and to multitask without forcing your brain to do the most basic of tasks. Most of the automatic systems that our body does daily, without a thought or effort. What a massive blessing it is.

How many of us give thanks for those things? Reflect on the things our body does on any given day and thank the One who blesses us and enables us to continue? Illness is a reminder of those things, and gratitude that it isn’t worse. Many people with long COVID have lost the ability to walk which, alhamdulillah, I haven’t been tested with. No matter what situation you are in, it truly could always be worse.

Ibn `Abbas (radiy Allāhu ‘anhu) narrated that the Prophet (ﷺ) said:

“There are two blessings that many people are deceived into losing: health and free time.” [2]

Trust, reliance, & gratitude to Allah

Allah does not decree anything but khayr (good) for His believers. With blessings, we are grateful and that is good for us. And with tests, we are patient and that is good for us.

For those struggling with illness, visible or invisible, know that Allah knows your battles. Take hope and inspiration from the life and story of Prophet Ayūb (‘alayhi al-Salām) as someone who remained patient through years of hardship, including with his health until Allah relieved him.

The only One you can truly rely upon is Allah.

And for those blessed with good health, be mindful and grateful to Allah for those things, for just as they are given to us, they can also be removed from us.

And Allah knows best.

Source: Islam21c

Notes

[1] https://sunnah.com/bukhari:5641

[2] https://sunnah.com/bukhari:6412