'Losing Yourself' After a Chronic Illness Diagnosis


You walked into the doctor and heard the words you will always remember: “You have *insert rare condition*.” In an instant your world turned upside down. You were happy for answers, yet you simultaneously knew your life would never be the same. Unfortunately, it never will be.

One of the biggest aspects of a new diagnosis is losing yourself. You lose hobbies and loves and you push people away. Your life goes from days in the mall to days in doctors’ offices praying for answers. Instead of going out on dates, you go out to specialists, excited at the prospect of treatments.

Depending on the illness, you will probably lose physical activity to some extent. It is devastating to be physically impacted by a chronic illness. You learn to pick and choose what you can do every day. You cannot do everything you want to anymore, so you have to make the hard choices. You may go to homecoming, but you cannot handle the after-party. A boy may ask you on a date, but you may only be able to stay in and watch a movie. It’s learning to make compromises in life on the things you should not realistically have to compromise on. You will come out on the other side, though. You will find a new identity and learn to be the person with a chronic illness rather than the chronically ill person. Your illness will become a huge part of your life, but it also will not define you.

The best piece of advice I can give you is to hold on to your old self, but accept that eventually you may lose that person. I am at the point where I have lost my old self, but I have also found a new person. Sure, I still have my brains and my compassion from before, but I am no longer the cheerleader. Rather, I am the cheerleading coach, chronic illness advocate, the girl learning sign language, the political volunteer and a million other identities I have acquired. Last night I was upset realizing I had lost that old person. I can no longer remember living without pain. I can no longer remember the full joy and freedom of cheering. I can no longer remember what it is like to be healthy. And yet, I came out the other side, and so can you.

It will be a process, but I promise you can redefine yourself. Educate yourself on your illness, get the care you need and learn to advocate for yourself. Write about your experiences, share with the world and find what makes you truly happy. Remember the old you, but also embrace the new.

We want to hear your story. Become a Mighty contributor here.


Find this story helpful? Share it with someone you care about.