Physical Pain Is Not the Hardest Part of My Chronic Illness


For me, the hardest part of living with a chronic illness is not the years you spend waiting for a diagnosis. It’s not the hundreds of doctor appointments and different specialists you see when you’re trying to get someone to listen to you and understand something is really wrong with you. It’s not the waiting game you play in the waiting room with yourself as you look around at people who look more ill than you. It’s not the mountains of paperwork and referral papers you constantly have to fill out and hang onto. It isn’t how long it takes to find the right combination of medicine to treat your symptoms, and it’s not the fact that you start your day with a cocktail of medications just to be able to function as you did before.

No. The hardest part about living with a chronic illness, for me, is crying on the way to the 12th doctor you’ve seen this month because you’re in pain and you fear this doctor won’t believe you either. It is the guilt that comes with having to call off another day of work — the third day this week. It is looking around the waiting room and seeing people in much worse states than yourself, and feeling guilty. It is the guilt that washes over you when you have to cancel plans on your friends and family, again. It is the time you spend trying to come up with a way to get out of the plans that you have. It is the back and forth game you play with honesty, because you don’t want your mother to know how bad you are feeling or that anything is wrong.

The hardest part about living with a chronic illness is having to start over. The hardest part about living with a chronic illness is having to find a new career, new passions, a new group of friends. The hardest part about living with a chronic illness is feeling like you don’t know yourself anymore, and feeling like a stranger in your own body as it transforms beyond your control. The hardest part about living with a chronic illness is suddenly having new or worsening mental health problems that no one seems to understand — not even yourself.

The hardest part about living with a chronic illness is having to explain your new life to people. The hardest part about living with a chronic illness is having to explain your new life to yourself. It is finding a new normal.

The hardest part about living with a chronic illness is finding peace with the life that you lived and the life that you will live. The hardest part about living with a chronic illness is finding new friends and finding support from your family. It is having to make the choice that some relationships are not worth continuing or trying to repair. The hardest part about living with a chronic illness is knowing that your illness is chronic — you have to live with it.

This blog was originally published on Cerebral Palsy News Today.

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Thinkstock photo by Grandfailure


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