Help Me Understand

Masking, migraines and the invisible cost of appearing "fine"

I didn’t know that July is Disability Pride Month until I saw a post about it last week. To me, disability pride means working together to dismantle both internal and external ableism in order to build communities that are truly accepting.

For those of you who know me personally, it may surprise you to hear me say that I often experience my AuDHD¹ as disabling. I do an excellent job at hiding it (A+ masker! Like Daughter, Like Mother!). But not really. Because for decades I have sat in a therapist’s office trying to resolve “treatment resistant depression” or some other “disorder.” What no therapist was able to help identify for me (nor any neurologist that treated my migraines) is that what I was actually experiencing was autistic burnout. Due to masking. And sensory overload.

You may see me and think “She is fine. Look at her. She has a family. She is an attorney, a marathon runner or [fill in the blank with whatever external accomplishment you want to look at.]” And I will tell you that I almost killed myself doing these things. Many times. What you see on the outside is not what is happening on the inside. Please read that again.

It is true for me. It was certainly true for Maisa. I bet it is true for you - and every other human being fumbling their way around on this planet. We don’t know what anyone else is dealing with. So can we please stop making assumptions about someone’s internal world based on what we can observe on the outside? Can we be more curious about each other’s internal experiences?

Assumptions are killing people. Maisa is proof of that.

In one of these photos I have a debilitating migraine, in the other I do not. Can you tell which is which, just by looking at me?

I share my experiences so that others might gain insight, a new perspective, or perhaps feel less alone. I share my experiences in the hope that it might save lives.

For as long as I can remember, I have had a fragrance sensitivity. I am extremely sensitive to perfumes, cologne, and synthetic fragrances. The worst offenders seem to be fragranced laundry detergent, fabric softener and dryer sheets. If you use it, I can smell it. Fragranced laundry fumes emanating from a dryer during a run can trigger instant nausea. It can cause a migraine that will last for days.

I have seen neurologists for my migraines for almost 30 years. At every appointment I talk about how these scents cause migraines for me. And at every appointment the doctors will ask me if I have tried eliminating certain foods from my diet. I have felt invalidated, gaslit and dismissed by every doctor with whom I have tried to discuss this connection between scent and migraine.

A quick Google search just now revealed this study from 2018 about fragranced products and autism. The study found that “autistic individuals are profoundly, adversely, and disproportionately affected by exposure to fragranced consumer products.” Included in the health problems caused are migraines. There are many studies showing a link between autism and migraine. There are also many other co-occurring medical conditions that are common with AuDHD, and yet most doctors don’t seem to recognize these patterns.

Now that I understand this (no thanks to the many doctors and therapists I have paid), I can confidently say that most of my migraines are caused by sensory overwhelm, not food. I am sensitive to fragrance, that is a huge trigger, which I already knew, but my sensitivity is compounded by other things - like light, noise, and stress. This explains why I get so many migraines when traveling. So many different and overwhelming environments. Now that I know this, I can try to reduce as much sensory input as possible. I use noise canceling headphones, Vicks VapoRub, I wear a mask if there is fragrance around me, and I wear sunglasses, even indoors sometimes. Even in a world that doesn’t typically accommodate these needs, I can still do small things to try to accommodate myself.

However, this is invisible work. Invisible self-accommodations for an invisible disability. The same disability that contributed to my daughter’s death. Ideally, I would live in a world that was more understanding, accepting and accommodating.

And I could. With some curiosity. And three words.

I have emailed hotels and Airbnbs to ask about fragrances. I have gotten some kind responses and some dismissive responses. Recently a potential host responded with a sentence that started with “Can you help me understand…?” He probably didn’t get why I was asking the questions that I was asking. But he didn’t ignore me or dismiss me as a potential high maintenance guest either. He was curious. Kind. And that made all the difference in the world. Just three words.

Help me understand.

So the next time you find yourself starting to feel confused, perhaps defensive or irritated. Maybe you see a behavior or receive a request that doesn’t make sense on the surface. Instead of making assumptions, I invite you to dig deeper. To see if you might find room for these three words also. Help me understand. They foster connection, learning, and growth. Something this world could use a lot more of.

1. I identify as AuDHD (autistic and ADHD), which is a neurotype that could not even be officially diagnosed prior to 2013 because autism and ADHD could not be diagnosed together. Additionally, what is known as Level 1 autism currently was called Asperger’s prior to 2013. (Asperger’s is no longer a diagnosis.)

I have no idea how we might categorize neurotypes a decade from now. I am not really a fan of these labels, and I think the DSM is problematic for many reasons. I am a proponent of understanding how my brain works and not pathologizing it. When I speak about autism and ADHD, I am speaking about my own experiences. I am just one AuDHD person and each person is unique with their own profile.