Invisible Illnesses: My Body, My Pain, Your Gaze
- Nadine Duguay-Lemay
- Nov 19, 2022
- 6 min read
I’ll begin this post without sugar-coating it: the past twelve months have been absolute SHIT. Yes, I’m deliberately using the word in its rawest sense—because it’s the only one that truly reflects what I’ve lived through.
I won’t go into every detail of this past year, but I do want to speak about what defined it most deeply: four surgeries, with a fifth one coming soon, to treat my occipital neuralgia. I’ve written about this condition before, but today I want to return to it differently—to talk about invisible illness.
An invisible illness is much like many chronic conditions or mental health struggles: unless you live it yourself, it’s hard to grasp its full impact. And because the suffering isn’t visible, empathy from others is often limited. The daily pain remains hidden, unlike illnesses that are more outwardly apparent, such as cancer.
If I’m writing today, it’s in the hope that this text will help foster a deeper understanding of invisible illnesses—their very real impacts, but also the behaviours, sometimes well-intentioned, that can nonetheless be deeply hurtful.
Living with Invisible Illnesses: Chronic Pain and Daily Life
I’ve shared parts of my journey in previous posts, but I want to briefly revisit what occipital neuralgia is. To explain it simply, I’m drawing on a definition attributed to Dr. Henry: it’s a condition in which damage or irritation of the occipital nerve at the back of the skull causes intense pain between the base of the head and the scalp, along with tingling, numbness, weakness, and sometimes nerve or muscle damage in the neck.
I often use—rightly or wrongly—the analogy of faulty electrical wiring: when electricity doesn’t flow properly, it sparks… and sometimes starts a fire. That’s essentially what’s happening in my nervous system.
In practical terms, I live with chronic pain that is often unbearable, always localized in the same spot on the left side of my head. It feels like electric shocks or a constant sensation of needles piercing the same point over and over. During flare-ups—when the pain intensifies and becomes relentless—I experience numbness at the back of my head and deep exhaustion. Imagine being hit in the back of the head with a baseball bat… repeatedly.
These flare-ups can also trigger other types of headaches. And sometimes, the pain is so intense that something as simple as brushing my hair becomes a challenge.
Living—and Trying to Function—With Pain
You learn, of course, to live with pain. You develop coping strategies just to keep going. But what I’ve observed is that my condition has continued to worsen since it became a permanent part of my life.
Physically, the impacts are many: chronic fatigue, disrupted sleep, low energy, secondary headaches. Psychologically, it’s often even heavier: difficulty concentrating, intense distress during pain episodes—especially when they happen in public—anxiety, hypervigilance, depression.
And sometimes, the hardest part is having to explain. Explaining yourself while you’re in pain is already too much to ask.
Treatments, Hope, and Complications
I’ve been on medication for about five years now, and according to my neurologist, I’ve reached the final possible combination of medications. They help somewhat—but not nearly enough.
The most effective treatment I’ve experienced is occipital nerve stimulation, a form of neuromodulation that sends electrical impulses to the nerves via electrodes implanted under the skin. Instead of pain, you feel mild tingling sensations.
I’ve had three neurostimulators, one of which was experimental. The treatment works extremely well—but I seem to be the perfect candidate for experiencing complications. I sometimes joke with my neurosurgeon that someone has to mess up his stats. Humour, at times, is the only alternative to rage or tears.
After my third surgery in March, I truly believed the worst was behind me. Five weeks later, I caught COVID-19. Ten days in, my incision became infected. Fifteen days later, the wire came out of my head. Three days after that, I underwent a fourth surgery to remove the entire system.
I’ve now been without a neurostimulator for over six months. Six months of pain. Six months of counting the days, hoping the fifth surgery will be the right one—and the last, for a long while.
What I Won’t Get Into Today
I could talk about the trauma of undergoing surgery alone every time due to COVID restrictions. About the distress, the fear, the anxiety of trying again. Maybe one day.
Today, I want to focus on what can truly make a difference: the behaviours to avoid and the behaviours to embrace when you’re close to someone living with an invisible illness.
Behaviours to Avoid When Someone Lives With an Invisible Illness
Offering unsolicited advice (even with the best intentions)
This is by far the most common—and the most exhausting.
When you live with an invisible illness, you often become an expert on your own condition out of necessity. You read. You research. You consult. You compare treatments locally and internationally. You explore traditional, alternative, and complementary medicine. You question diet, sleep, stress, and lifestyle.
So when someone says, “Have you tried…?” without being asked, it can feel like:
a dismissal of everything you’ve already tried,
an implicit judgment (“If you were doing the right things, you’d be better”),
or a power imbalance where the other person positions themselves as the expert.
Before offering advice, ask yourself one simple question: Was I asked? If the answer is no, the most respectful response is often… silence.
Comparing or minimizing the condition
“Oh, so it’s like migraines.”
“I get headaches too.”
“I’ve experienced something similar.”
These comments are rarely meant to harm—but they often do.
Every condition is different. Every body is different. And every pain is experienced uniquely. Comparison is often an attempt to relate, but it can end up reducing the other person’s experience into something more familiar—and therefore more comfortable—for you.
If you want to understand, ask open-ended questions instead:
“How does the pain show up for you?”
“What impact does it have on your daily life?”
“What’s been the hardest part lately?”
Understanding begins with listening, not interpreting.
Using the person as an emotional dumping ground
When someone lives with an invisible illness, their energy is already largely spent just trying to get through the day.
Saying:
“I know you’re not doing well, but you’re the only person I can talk to”
places an additional emotional burden on someone who may already be at capacity.
The person will tell you if they’re available. Never assume they are. Being ill does not mean being responsible for others’ emotional needs.
Mistaking bursts of productivity for “everything is fine”
Many people living with chronic illness develop productivity bursts as a coping mechanism. Doing, creating, organizing—sometimes intensely—can be a way to:
regain a sense of control,
prove to oneself that they’re still capable,
protect self-esteem,
or temporarily distract from pain.
This is not a sign of recovery.
The mistake is:
expecting more,
raising expectations,
or later criticizing the person for not being able to sustain that pace.
The crash will come. And it often comes hard.
Behaviours to Embrace: Being a True Ally
Simply being present
Presence often matters more than words.
Being present means:
accepting that you won’t fully understand,
respecting silence,
allowing emotions without trying to fix them.
Sometimes, the greatest support is simply walking alongside someone—without questions.
Educating yourself
Taking the time to learn about the person’s condition is a profound act of respect.
It means:
reading about the illness,
understanding symptoms and impacts,
recognizing fluctuations between “good” and “bad” days,
accepting that what’s true today may change tomorrow.
The more you understand, the less the person has to explain—and the less alone they’ll feel.
Offering concrete support
Accompanying someone to a medical appointment means:
sharing the mental load,
hearing information firsthand,
asking questions,
better understanding the decisions being made.
It fosters healthier communication and reduces misunderstandings.
Creating a shared pain scale
Pain is subjective. A 5/10 for one person may be a 10/10 for another.
Establishing a shared scale helps:
avoid misinterpretation,
respond more appropriately,
build mutual trust.
Seeing the person beyond the illness
Invisible illness can deeply erode self-esteem. It can make someone feel defined solely by pain.
Continuing to:
invite them out (without pressure),
offer genuine compliments,
recognize their strengths and qualities,
helps remind them that they are more than their condition.
In Closing
You don’t need to understand everything. You don’t need the right words. You don’t need solutions.
You simply need to be there.
And sometimes, that changes everything.
Comments