What It's Like to Not Have a Cure for Your Invisible Illness

On the outside, I look like the “typical” 24-year-old.

I laugh with my friends at work. I work for one of the largest tech companies in the world. I’m studying in college to further my career.

But, as soon as I get home and shut my front door, my whole world flips upside down.

Every day, in order for me to survive, I have to take 13 pills, 2 inhalers, and use a nebulizer. I am told by strangers every day that I am such a happy person, but they have no idea what it’s like living with an invisible disease.

I am currently going on week four of short-term disability because I cannot breathe if I leave my bed. After seven hospital visits (including a ride in an ambulance) and four doctor’s visits, nobody can seem to understand why this is happening. And so far, all I’ve gotten is a cocktail of pills. Uppers, downers, sleep aids, steroids, pain killers, enough to knock out a horse. Still, nothing. Next step: put a tube down my throat to ensure my esophagus still isn’t infected from the amount of medications I’ve been on.

It feels like my life life consists of only my illness. My life consists of my depression. My life consists of my anxiety. All of my hard work and my dreams are vanishing because I have a disease nobody knows how to cure.

My pulmonologist has officially said I need to see someone else. It broke me. It crushed my heart.

If he hasn’t been able to “fix” me in two years after 10 hospital admissions and many, many tests, I fear I will never get to live the life I dreamed of having.

Sometimes it’s hard to explain to my husband and family because they don’t understand. I know I can’t be alone in this.

Have you experienced similar feelings because you don’t yet have a cure? If you are in a similar situation, please let me know so we can connect.

We are not alone.