What It's Like to Live With an Incurable Illness

I remember the day I was diagnosed. It had been a year of going from doctor to doctor trying to find answers for why I was in extreme pain. Some doctors made it seem like it was all in my head. I was starting to feel like I was losing my mind. This new doctor had just done extensive blood work. I hadn’t brought anyone to my appointment, thinking it was just going to be like the others. I remember her walking in the room and telling me I have a condition called ankylosing spondylitis. She told me there was no cure, that their goal was to make me comfortable. I cannot fully describe to you the feeling when I heard those words. It was earth shattering, shocking, and devastating. It has been a year since then and it has been a year full of ups and downs.

Living with an incurable disease and a progressive one is the most difficult thing I have ever been through. I am 26 years old and feel like I am in my 70’s. Some days it is hard to get out of bed. Some days I can’t go to the grocery store because I can’t walk around it. Some days I am too  exhausted to shower or brush my teeth. I pretend often that I am OK, but on the inside my body is screaming at me. It is difficult to stand up sometimes. Having an invisible illness is hard. I have a disability parking pass, and I get judgmental looks from others because it does look like I am “normal.” Some people think I am lazy. My loved ones around me often don’t know how to respond to my pain. They want to fix it, but the reality is I have a progressive illness that will probably get worse over time. I have lost friends who think I am being too negative. So, I have come to realize that many people don’t understand chronic illness and how to respond.

I am in pain every moment. The only relief I get is when I fall asleep, and I usually am not able to sleep through the night because I am waking up from pain. Chronic illness can be lonely, and I often feel alone. It is hard for
me to fully express how much pain I am in with the people around me. I don’t want to burden them. I have often felt like my body was failing me. I have felt trapped in this body, and it fills me with despair. I worry that my dreams of travel and having children won’t happen. I worry about how the disease will progress. I try to stay in the present moment, however it’s hard when I see how the disease has already progressed in a year.

The truth is, having ankylosing spondylitis can be heartbreaking at times. I had to grieve for my body, learn my limits, and then slowly accept it. I found when I was fighting the diagnosis, it made things more difficult. I have had to establish a support team around me of medical professionals, mental health professionals, and supportive friends and family. I have started writing and that helped me feel less alone. It’s a process. I have learned to be gentle with myself — I have to be. I have learned to become an advocate for myself when dealing with doctors, pharmacies and insurance companies. I have learned to go with my gut, and trust my instincts because I am the one with my body and I know what’s going on with it. It is a difficult journey. I have learned though when I share the truth with “safe,” understanding people, it helps me not feel alone. It doesn’t take the chronic illness away, but it helps lesson the feelings of despair and depression.

Getty Images photo via LeonidKos