They used the word chronic. Chronic illness. Like its something ill just have to live with now. Forever. The doctor said it so casually, like he was telling me about the weather. "Youll need to make some lifestyle adjustments" he said. Adjustments. What a nice way to say your life as you knew it is over.
Im only 29. Im supposed to be in my prime. Building my career. Traveling. Living. Not managing symptoms and counting spoons and canceling plans because my body decided to betray me. I had plans. So many plans. And now everything feels uncertain. Can i keep my job? Will i be able to have kids someday? Will i ever feel normal again?
The internet is both helpful and terrifying. Theres communities of people living with this. People who understand. But theres also worst case scenarios and horror stories and statistics that make me want to throw up. I spent three hours last night reading medical journals trying to understand whats happening to my body. Like if i can just understand it enough i can control it. But i cant. Thats the hardest part. The complete lack of control.
Everyone keeps telling me to stay positive. To fight. To not let this define me. But how do i not let it define me when it affects literally everything? When i have to plan my days around energy levels and medication schedules? When i have to turn down invitations because i dont know if ill be having a good day or a bad day? When i look at my future and see limitations instead of possibilities?
My boyfriend is trying to be supportive but i can see the fear in his eyes. This isnt what he signed up for. Weve only been together a year. He fell in love with the version of me who could go hiking and stay out late and be spontaneous. Now im the girl who needs help opening jars and sometimes cant get out of bed. I told him he could leave. That i would understand. He said hes not going anywhere but i wonder how long that will last when the reality really sets in.
Ive started lying to people. "Im fine" i say when they ask how im doing. Because the truth is too complicated. The truth is im scared and angry and grieving the life i thought id have. The truth is some days i wake up and forget im sick and then reality crashes down and i remember this is forever. The truth is exhausting to explain to people who dont get it.
Work is getting harder. I havent told my boss yet. Im scared theyll see me as a liability. That opportunities will dry up because they cant rely on me. I push through the bad days, smile through the pain, pretend everythings normal. Then i get home and collapse. This double life is unsustainable but i dont know what else to do.
The guilt is overwhelming. Guilt for canceling plans. Guilt for not being fun anymore. Guilt for burdening my loved ones. Guilt for feeling sorry for myself when other people have it worse. Guilt for being angry when i should be grateful its not something terminal. The guilt never stops.
I joined a support group. Sat in a circle with other people whose bodies failed them. We shared stories. Cried together. Laughed about the absurdity of it all. For the first time since the diagnosis i didnt feel alone. These people get it. The invisible illness. The judgment when you dont look sick. The disbelief from doctors. The insurance battles. All of it.
One woman there has had this for 15 years. She said it gets easier. Not the illness itself but the acceptance. Learning to work with your body instead of fighting it. Finding joy in the small things. Redefining what a good life looks like. I want to believe her but right now im too angry to accept anything.
Im grieving. Thats what my therapist says. Grieving the healthy person i was. The future i imagined. The simplicity of taking my body for granted. Grief isnt just for death. Its for any loss. And i lost something i cant get back.
But im also still here. Still breathing. Still fighting even when i dont want to. My body might be broken but my spirit isnt. Not yet anyway. Some days thats enough. Some days barely making it through is a victory. Im learning to celebrate the small wins. Getting dressed. Leaving the house. Having a good day. These things i used to do without thinking are now achievements.
I dont know who im becoming. This new version of me that exists with chronic illness. Sometimes i catch glimpses of my old self and it hurts. Other times i see strength i didnt know i had. The ability to keep going when everything is hard. The capacity to find moments of joy even in the struggle.
This wasnt the story i wanted to write for my life. But its the one im living. And maybe thats okay. Maybe theres beauty in adaptation. In resilience. In the community of people who understand. Maybe this illness will teach me things about myself i wouldve never learned otherwise.
Or maybe thats just what i tell myself to get through the day. Either way, im still here. Still trying. Still hoping that tomorrow might be a good day. And for now, thats enough.