3 Truths About Living with an Invisible Illness

June 30, 2024/Susan Doughty

I like to joke that I was born into advocacy. My father was paralyzed in a diving accident when I was two weeks old and I grew up fighting alongside him for adequate accommodations in everything from Kmart parking lots to government buildings. My dad didn’t see advocacy as a chore, he viewed it as a way of life and saw it as a necessary first step in making the world a better place for himself, and others.

My father’s disability was clearly visible: He was a quadriplegic with a motorized wheelchair, specialized van, and we lived in a house with numerous physical accommodations. My father’s chronic pain from his injury was an invisible illness; something I couldn’t fully fathom until I was faced with my own invisible illness when my migraine attacks became chronic. But even growing up in a house where we understood the importance of advocating for our health, I was blindsided by the loneliness of chronic migraine.

As I reflect on the myths, truths and actions shared during Migraine and Headache Awareness Month, here are three ‘truths” I wish I understood earlier in my life:

Invisible ilness does not mean insignificant

My father had a visible disability which made it easier for people to understand why he was in pain. Migraine, as with most invisible illnesses, has no telltale signs to the outside world. But that does not negate the serious nature of this disease, it just means people living with migraine (and other headache diseases) need to speak more freely about our pain and our needs when we are having an attack, and feel more comfortable doing so. Personal stories are important. My experience is as relevant as someone with a visible disability, and I will not let my brain trick me into thinking otherwise.

Your experience is not my experience, and that is ok

In my twenties, when I would have a migraine attack, I would become upset when someone would share the “cure” that worked for them. More sleep? Been there. Yoga? Done that. My disease will not be cured by drinking more water, but thanks for thinking of me. More than 20+ years into my migraine disease, I understand that things that work for others will not work for me. And that is okay. I am glad they found relief but know that my migraine toolbox is built just for me. We can find common ground and support each other regardless.

Who you surround yourself with matters

My father had a wonderful group of friends who were also in wheelchairs. They regularly went to dinner, joked about their experiences and supported one another. Now, even a decade after my father’s passing, I still have a relationship with this group of people. They are part of the fabric that has made me who I am today. Community is meaningful. Some of my dearest and closest friends live with a headache disease and they motivate me to fight harder than ever to make treatment more accessible for everyone with an invisible illness.

As we close out June, it is my hope that we continue to be vocal about living with headache diseases. From wearing my Shades for Migraine while at the lake this summer to attending Retreat Migraine in September — advocacy will continue to be a way of life for me. I share this personal account to remind myself, and others, that advocacy (like life) is what you make it.