I’m not sure who I am anymore.

My medical mystery/rare disease has altered most of what I believed to be true about myself.

If we were to have crossed paths before May of 2023, this is who you would have met.

• I was an adventurer
• I was a foodie
• I glowed with good health
• I had an active circle of friends
• I was kind and loving to my family
• I felt bursts of joy regularly
• I reveled in being alive
• I felt like I had value as a person

Of course, my life was not all easy sunshine. I’ve struggled for most of my life with anxiety and PTSD following a sexual assault as a teenager. But, generally speaking – my life was full and I was happy.

The new me is different.

• Adventures are fully on pause. I’m not able to travel like I used to. I’ve had to stop backpacking. I missed my first trip abroad to Greece because of this illness.
• I rarely dine with friends anymore and we hardly ever go out because eating is so challenging. During a flare, it’s essentially a menu of baby food and milkshakes.
• I’ve lost 35 pounds and have lots of pain and scarring. I look tired and worried – and much older.
• Many of my friends have drifted away – I’m not fun anymore and they just don’t know what to say and end up feeling uncomfortable. I get it – it’s hard to sit in this dark space with me.
• I snap at my family constantly, because I often feel that they don’t truly understand what I’m going through. How could they? They’re having their own version of the experience that I don’t really understand either. I have a therapist now because I know I’m causing trauma to the people I love.
• I feel frequent waves of despair and uncertainty. I never feel safe.
• I can’t count how many times I have spoken aloud ‘I wish I would just die, so I can be done with this.’
• I feel shame, sadness, and embarrassment about existing. I often feel like I’m a burden and don’t deserve to take up space in this world.

That’s heavy, right?

I hope it’s not forever. I hope I heal physically. If I can’t heal physically, I hope I can evolve and come to a place of greater peace with who I am now.

But for now, I’m a puzzle with lots of missing pieces. Maybe some of the pieces are just temporarily lost, maybe some are gone for good, maybe some of the pieces on my board are from a totally different puzzle. I’m working through this and trying to still find value in my one precious, messy life.