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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.

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Getty Images photo via LeonidKos