Being diagnosed with a life-threatening, chronic illness transforms you. It’s elicits an unfurling spiral of loss. You can’t help but feel a full spectrum of negative emotions as you watch your body and your life fall apart.

For me, grief has been the most intense and ongoing of my negative emotions. It comes in daily, sweeping waves.

I mourn so many things…

• My whole and healthy body
  Gosh, I miss it so badly for all the reasons. It was so easy and limitless to exist in that body. Everything is difficult and painful now. I see myself as an ugly, disgusting, broken freak. The physical and mental toll has aged me. My eyes don’t have the bright spark they used to. That’s not me in the mirror anymore.
• The ease that I used to be able to navigate the world.
  With a functioning, intact immune system, going to sporting events, dinners out, parties and movies were all things I did often. We were booked to go to Greece several months after I first developed symptoms of my illness. I had just gotten my passport and I was so stoked to earn a stamp on my first trip abroad. I was too sick to go. It was such a crushing blow.
• My sense of safety and security
  I used to feel at home in my body and my life. Now I feel detached and anxious in my own skin – everything is so uncertain. I feel like every day carries a sense of being in a fight or flight state. I often wish my soul could slither out of this shell and find a new body to inhabit.
• So much lost time
  I’ve lost over a year and a half getting to a diagnosis. I won’t start treatment until the end of November. Remission isn’t guaranteed. If I do get there, it might take five or more years of constant treatment. Relapses are incredibly common. When you’re sick like this, you sit on the sidelines of life and watch everything pass you by. It fills me with sadness and envy.
• My uncertain future
  I worked hard and saved money for 30 years. I had planned to retire soon, but now I feel immense pressure to keep working so I can keep the security of my comprehensive health insurance plan. Will I even live to be old? Do I want to anymore?
• My friendships
  I don’t believe my friends mean to hurt me. I think some people don’t understand what a person with chronic illness goes through. They just go on with their life without you, and don’t really think about your new reality. Some people feel like they’re doing you a favor by leaving you alone – you have sooo much going on – I don’t want to bother you. And some people just don’t have the emotional capacity to sit in a dark space with you. It triggers them. There’s no way around the fact that being chronically ill is incredibly lonely and isolating.
• Easy joy
  It used to be so easy to feel joy over all the small things in my life. It happened often and spontaneously. Now, cultivating joy is a tough, concerted effort, and sometimes the ‘wins’ are really small. Sometimes joy doesn’t show up at all.

What am I doing about it?

If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward. – Martin Luther King

When you go through a thing like this, the one option you don’t have is stopping. You have to face it and find a way to get up and keep going. Facing things is messy and painful, but it’s your only choice.

Every day, I try to put things in perspective. I’m just about to get started with my treatments. I don’t know what the future holds. Maybe it will be amazing? Maybe one day I’ll find a new normal that I’m content to live with. Maybe I’ll be dead by Christmas. I don’t know what future awaits me. It sounds morbid, but remembering I am mortal allows me to try and squeeze the most out of each day. I’m still alive TODAY, so I will do my best to live fully.

I try to hold space for a little bit of hope, but remain realistic about my condition. For me, feeling hope is radical, terrifying, and dangerous. I don’t want to set myself up to be crushed when my hopes aren’t fulfilled. Nothing has worked in my favor so far, and maybe it will always be like this. I think psychologists call this protective pessimism. It might not be the best coping strategy for others, but I feel validated by being brutally honest about the bad things that might happen.

I also found a therapist that lets me vent and helps me process. She has had similar life experiences and shares my worldview. She listens without judging or trying to fix my feelings. Talking to her helps.

I wouldn’t say I’m thriving – but I’m mostly upright, processing my grief, and moving forward.

Disclaimer – I am sharing my feelings at the moment. I am still early in my diagnosis and trying to unpack and process complex emotions. How I feel today is not necessarily how I’ll feel a year from now. I ask for grace as I share some dark, negative feelings.