“But You Don’t Look Sick”
“You don’t look sick.” Most people mean it as a compliment. But I know from living with migraine that it feels like a dismissal.
How is illness supposed to look?
Many of us with chronic illnesses have learned to smile through pain. We go to work. Take our turn at carpooling. Volunteer in our communities. We show up for kids’ sports and band concerts and family gatherings while tackling symptoms others cannot see. We become experts at appearing okay.
The problem is that when people can’t see an illness, they often struggle to understand it.
Migraine is more than “just a headache.” It is a complex neurological disease that affects vision, balance, speech, cognition, sensory processing, mood, and energy levels. That’s a long list. Symptoms can begin hours or even days before the pain phase and may linger long after the headache itself has ended. Yet from the outside, someone experiencing a migraine attack may look completely normal. Most of us work to perfect this. In my case, I don’t want to let anyone down, become a burden, or have anyone change their plans because of my illness.
What others don’t see is the continual behind-the-scenes management that goes on. Can I tolerate this light? How much longer can I stay? What triggers are here, and can I avoid any of them? When should I take my preventive medicine? Do I have enough energy to get home?
Invisible illness carries two burdens. The illness itself and the burden of explaining it to others. There comes a point when the attack becomes unmanageable, that I have to reveal it to someone else. My facade has to drop because the symptoms overwhelm me. Inevitably, I will disappoint others, and the knowledge of this adds to my distress. Even that becomes too much to carry in the heat of the battle.
There have been times when I felt like I had to prove my suffering. I have had to balance canceling plans and disappointing others against pushing through and attending. If I attend, people assume I must not be that sick, and I am caught in a no-win situation. It is only with age that I have learned that self-care during these episodes is the decision that works out best for all. I don’t do this perfectly.
Society expects illness to be visible. We understand a cast, a wheelchair or crutches, a surgical scar. There are few visual cues for neurological diseases, chronic pain conditions, autoimmune disorders, and other invisible illnesses. I am used to hearing: You look fine. Everyone gets headaches. Have you tried drinking more water? Maybe you’re just stressed. These comments usually come from a lack of understanding rather than a lack of compassion. But they feel isolating.
In addition to managing my environment, there is the invisible work of medication management, regular appointments with my neurologist, and tracking triggers and frequency. I must allow a lot of flexibility in my schedule to account not only for the active phase of the headache, but for the substantial chunks of time leading up to (prodrome) and following (postdrome) this phase. I have to continually decide which events and activities are worth spending this curtailed time and energy on.
One of the most meaningful things we can offer someone with an invisible illness is belief. Not advice. Not skepticism. Not comparisons. When someone says they are in pain, we do not need visible proof to respond with compassion. Perhaps a better response than you don’t look sick is thank you for sharing that with me. Or how can I support you? Or,
I believe you.