On Invisible Illness

By Rivka Yeker

Theories that diseases are caused by mental states and can be cured by will power are always an index of how much is not understood about a disease.
— Susan Sontag
Photo by Morgan Martinez

Photo by Morgan Martinez

People with invisible illnesses often avoid planning. We mark our calendars in pencil, for the purpose of it being easily erasable if we wake up that day feeling as if our bodies are rejecting us from the inside out.  There is no cure for chronic illness, for autoimmune diseases, for the things our body controls that we can’t.

I have been dealing with a headache disorder that has been restricting me from ever living a normal, healthy, consistent lifestyle ever since I hit puberty at 11. I have always felt the need to apologize for my inability to stay out a whole day, my anxiety towards sleeping at another’s house due to not knowing whether or not my head will cooperate, even frantically writing emails to teachers and professors for missing their class because of something I couldn’t mend in time (or at all).  For a long time, I sat through events and parties with a pounding headache, just to say I could be there. I went out even though I felt physically and mentally ill, and I continued working even through incredible pain. Only in the past few years, has the illness worsened, that it forced me to skip out on many social and professional endeavors, but I have learned to listen to my body when it is telling me it’s turning off.

Chronic headaches means that I get at least 15 headaches in a month, which equates to half of my month is spent feeling like garbage. These headaches could range from mild (bearable, usually treatable with Excedrin), intense (usually not treatable, can barely get through a whole day with but still doable), and unbearable (usually migraines and typically ends in vomiting and needing all the lights off with my head shoved in a pillow). Headache disorders are lifelong and they are debilitating, causing them to decrease one’s quality of life. Not only are they physical, but they also increase depression, anxiety, and sleep disturbances, which makes everything all the more difficult.

Since headaches and migraines are typically given to us by our parents, I shouldn’t have been surprised when it started becoming so consistent and disabling. I’ve been watching both my parents struggle my entire life, mostly seeing how my mother would spend days in bed trying to fight a monster clawing at her body and attacking her own mental health. Even with her chronic pain, she was still very much a mother in that she screamed at my brother and I while a brick threw itself back and forth against the walls of her head. Now that I don’t live at home, I don’t see my parents’ suffer as much, but I know that they are some of the only people I can confide in about my headaches and migraines and be sure that they completely understand. This is something we cannot escape, regardless of how much we try to persevere through the pain.

Trying to explain to people how it feels when I have a migraine is almost impossible, it is crippling and it is draining. My face flushes, I am nauseous, my head is a thousand different metaphors for pain, and my entire body needs rest. It needs a place to break down. When I make plans, I always tell people that I am flaky and to be aware of this, but I don’t want them to think it’s because I don’t want to spend time with them. I am genuinely unsure of how I am going to wake up that day. Is my head going to hurt? How sad am I going to be? How anxious will I feel? Will I have no energy? There is never a concrete answer and I am never sure how I will react. If I have the option of staying in and taking care of myself, I would much rather do that than do what I used to do: force myself to endure pain, only to know I’m going to regret it.

There are too many times when I feel bad for something I can’t control. I feel bad that I feel ill, that I can’t do something, that I have to leave early, that I have to be alone, that I can’t make it to a lecture, I feel bad that I have to warn people that I am flaky, and that I am quite possibly notorious for that. Only lately have I learned that one should never apologize for their illness, for their mental state, for their inabilities to follow through. I have learned that especially in a society that is unbelievably demanding, quick-paced, and vicious, we must learn to step back and value someone’s capabilities. Those who are genuinely ill, whether it’s someone who struggles with lupus, MS, diabetes, chronic headaches/migraines, mental disorders, even women dealing with their menstrual cycle, or any other illness that seems invisible, deserve their right to be ill and shameless about it.

They are already suffering enough.

It feels awful to feel like a burden around people, to avoid relationships because you don’t want to become an annoyance for someone else, you don’t want pity; you want to feel normal. If someone you know struggles with an invisible illness, acknowledge it and understand their needs and restrictions. We are trying our best to get through life, just like everyone else.