Navigating the invisible: Living with autism and fibromyalgia

The thing with chronic pain is that you never get used to it.

It lingers in your mind and body like background music that refuses to stop playing. 

You start loving sleep a lot because it drowns out the pain; it is an escape, a few precious hours where you are not aware of your body.

I remember talking to my manager last year. I had said that I wanted to lie down every two hours between work because of the intense back pain caused by fibromyalgia. I was asking for accommodations, a place to lie down for 10 minutes.

They responded, "You can go lie down on the floor in the production room." To say that I felt humiliated would be an understatement. I felt deeply embarrassed for asking, as if my needs were unreasonable. I tried to respond back, but my voice got somewhere stuck in my throat. You gape at words. Meanwhile, the relentless back pain hits you even harder.

I was diagnosed with fibromyalgia in 2015, during my second year of my Bachelor’s degree. At first, you are happy that you have a word to describe your pain, a label for your ordeals, a sigh of relief—I'm not alone in feeling this. You have the urge to find all the medicines, to go to countless orthopedics and specialists, to undergo all the tests. The white halls of hospitals become imprinted in your memory. 

Despite all the efforts, you still struggle to sit up straight.

All the medicines you chug in desperation cause you immense stomach pain and headaches that never end. Then you get to know that there is no cure. The pain will last as long as I live. This realization sits as a dark cloud on your chest. You struggle to breathe, to be okay with this new reality.

Every movement hurts. The thing with the spine is that it’s connected to almost all body parts — your hands and legs, your neck. Every time I move, it hurts. Every time I lie down, the pain doesn’t stop. People around you do not understand what’s going on. That’s the thing with having an invisible disability, you form a façade to navigate through daily life. From the outside, I might appear fine, even normal. But underneath that exterior, there’s a constant battle waging between my mind and body.

Friends offer their support, but their inability to see the full extent of my struggles often leaves me feeling isolated. They see me laughing, participating in activities, and assume I’m doing well. They don’t see the immense effort it takes just to get out of bed, the planning involved in every single action to manage pain and sensory overload. It’s not their fault—they simply cannot see the invisible war I’m fighting.

And then, almost two years ago, I realised I was autistic. 

This new understanding added another layer to my experience with fibromyalgia. Autism makes me highly sensitive to sensory input. Bright lights, loud sounds, and strong smells are annoying and painful. Fibromyalgia heightens this sensitivity. The chronic pain from fibromyalgia makes my already heightened senses feel even more acute. The slightest touch can feel like a sharp stab, a loud noise can send a shockwave through my body, and a bright light can feel like a physical assault. It's as if my body is constantly in a state of alert, bracing for the next wave of discomfort.

Fatigue is another relentless companion. Social interactions, already exhausting due to autism, leave me completely drained. Fibromyalgia adds a layer of fatigue that never seems to lift. Even after a full night’s sleep, I wake up feeling as though I haven’t rested at all. This constant exhaustion affects every aspect of my life, making it difficult to function and engage in everyday activities.

Last year, there were many days when I was unable to get up from bed. Fibromyalgia is a nightmare; you just let the pain visit you, take its time, and let it be there. The pain becomes a constant companion, one that never leaves, one that doesn't even allow you to forget it for a moment. Living with autism and fibromyalgia means that every day is an exercise in endurance. 

The cognitive fog, or "fibro fog," adds another layer of difficulty. Autism affects my executive functioning skills, making planning, organizing, and completing tasks challenging. Fibro fog compounds these issues, causing memory lapses and difficulty concentrating. Some days, even the simplest tasks feel monumental. Thes smallest of things like getting out of bed and brushing feels like a victory.

The emotional toll is also significant. Being autistic, I struggle with identifying and expressing my emotions, a condition known as alexithymia. This makes it hard to articulate what I’m feeling or why, leading to misunderstandings and a sense of isolation. Depression and anxiety are constant shadows, exacerbated by the frustration of dealing with an invisible illness that others often don’t understand. 

Social interactions are very challenging. The fatigue and pain make it hard to maintain relationships. When I do manage to interact with others, my conditions often make me feel misunderstood. People can’t see my pain or sensory overload, so they don’t always understand why I might need to leave early or why I’m not as engaged. This leads to a sense of loneliness, as if I’m fighting these battles alone. Office spaces defeat me; I try to mask all day. By the time I come back to my room, I have no energy except to crash and sleep, waiting for the next day.

Simple things like grocery shopping or attending a social gathering require immense effort and planning. The unpredictability of my conditions means I never know how I’ll feel from one moment to the next. Some days, I can manage a semblance of normalcy; other days, even getting dressed feels like an accomplishment.

Living with both autism and fibromyalgia is like navigating a complex, ever-changing ground. Each day presents new challenges and obstacles. The interplay between sensory overload, chronic pain, cognitive fog, and emotional turmoil creates a unique and often overwhelming experience. 

And probably, the worst thing is you have no idea what’s going on with you.

With this piece, my idea is not to rant. I just wanted to give a glimpse of countless people like me who have a hard time with their body, with their mind, and the world that refuses to accept and understand them. I end with no tips or takeaways; the only thing I want to say in the end is that understanding and empathy can go a long way in making our invisible battles just a little bit easier to bear.

So when we ask for accommodations, when we ask you to sit with us, when we ask you to believe our lived experience, please listen to us. When we ask for that unexpected leave, know that it's not a sign of weakness or a lack of commitment. It’s a necessity, a crucial part of managing our health and well-being.

When I request to work from home, it's not because I want to slack off, but because the environment of the office can sometimes be too overwhelming. The bright lights, constant noise, and social interactions can trigger sensory overload and exacerbate my pain. A quiet, controlled environment allows me to be more productive and less distracted by my symptoms.

When I need to take frequent breaks or lie down, understand that it’s a way to manage the intense pain and fatigue that come with fibromyalgia. It’s not about wanting special treatment; it’s about being able to function at a basic level.

So, when we ask for understanding, accommodations, or simply for someone to listen, please know that we are not asking for special favours. We are asking for the opportunity to live our lives as fully as possible, to contribute, to be included, and to not be defined solely by our conditions. 

Our requests are not unreasonable. We are asking for a chance. 

Thank you for listening :) 

“To be truly radical is to make hope possible rather than despair convincing.” Raymond Williams 

P.S. Here are some signs I found that might indicate fibromyalgia or chronic pain/fatigue:

• Persistent pain that affects multiple areas of the body.

• Feeling tired even after a full night's sleep and experiencing exhaustion after minimal physical activity.

• Experiencing memory lapses, difficulty concentrating, and feeling mentally foggy.

• Feeling pain from pressure or touch that wouldn't normally be painful.

• Trouble falling or staying asleep, or waking up feeling unrefreshed.

Akshay CM (he/ they) is a queer-autistic and disabled Diversity, Equity, and Inclusion (DEI) professional and organizational sociologist. With a rich background in international marketing networks, fintech services, startups, and educational consultancies, Akshay has spent the last several years developing and implementing feminist DEI strategies, conducting cultural audits, and leading DEI trainings across multiple sectors.

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