Why I’m Still Grieving the Person I Was Before My Chronic Illness Diagnosis


I was the girl who friends could rely on for advice or for a shoulder to cry on. I was always busy with plans. I was the girl who was always smiling and filled with happiness. But looking at me now, you wouldn’t recognize that girl. That girl is gone and might not ever come back. She no longer exists due to a chronic illness.

I was diagnosed with postural orthostatic tachycardia syndrome (POTS) in November 2014. I was fine for more than a year until a rare infection began to attack my body. Slowly, over a three-month period, my immune system decreased. I was fighting off common colds every day that felt like the flu to me. Out of nowhere, one day I woke up and couldn’t move my body. I was terrified that I was paralyzed and something was wrong.

I missed school for three weeks and was forced to do homebound school. Imagine being a normal high school student one day and then waking up the next to find your whole world turned upside down. I couldn’t believe after all this time that my body was declining my medication. I was finally feeling what POTS truly feels like, except this wasn’t just a “flare.”

Summer was horrific for me. I was invited to hang out with friends, but I knew I couldn’t physically go to the beach when it was almost 90 degrees outside. I hated to have to say no to friends when I needed them the most.

Over time, I became more bitter and down in the dumps. I kept telling myself I’m not depressed and that I was just in a sticky situation. As the days passed by, I realized this was how it was going to be for me. I wasn’t going to be who I used to be and was never going to feel that same way again. Yet my mind wasn’t accepting it.

There are five stages of grief: denial, anger, bargaining, depression and acceptance. I had been in denial for months. I couldn’t believe my situation. I still don’t believe it.

At the same time, I was angry. I was filled with pure rage at the fact that I had no idea why I became randomly ill. It didn’t make sense to me then and still doesn’t make sense to me now.

I didn’t spend much time bargaining, since I had no idea what I could have done differently. I don’t know how I got POTS, so how could I sit there and say, “I wish I never did that, so maybe I wouldn’t have gotten POTS.”

I’m now in the depression phase. I feel alone. I can’t drive without my anxiety and heart rate going through the roof, which causes me to become lightheaded and almost pass out. I have to rely on my family to take me places. On top of that, they have to live their own lives and do their own things. They still have friends to see and things to do while I sit at home contemplating my situation.

I don’t know how long it will take for me to finish grieving. I think I’m struggling because everything happened in a short period of time — being diagnosed with numerous issues, losing friends, trying to complete my junior year and trying to keep myself healthy. Nobody I know will ever understand what I’m truly going through. That’s OK because I don’t care if they believe if I’m actually ill or if I’m faking it. I won’t try to please others when I can’t even take care of myself. I can admit I’m not happy anymore. I’ve lost weight to the point where I don’t love myself like I used to. I now feel self-conscious about what I wear.

Being depressed and chronically ill doesn’t define who I am. I may come off as a grumpy, angry teenager, but in reality, I’m a sad and lonely person who feels like I’m alone in this fight.

If there are others out there grieving their old lives, please make sure to hold on to hope — hope that one day they’ll be normal and happy. One day they will feel good and will no longer need to grieve their old lives. While I, on the other hand, am still struggling to accept this.

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Amy Keys is a writer who was diagnosed with postural orthostatic tachycardia syndrome (POTS) in 2015.
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