I had eight years with my body before she stopped being who I needed her to be. Before December 15, 1995 I didn’t think much about her at all. She helped me do all the things my young self wanted to do. We played sports and games, we ran, got dirty, cried, laughed, and went on endless adventures together. That December, right after I turned 8, my pancreas stopped working and everything changed.
I remember getting really sick and going to the doctor. I remember learning about counting carbohydrates and taking insulin. I remember learning about ideal blood sugar ranges and how to plan ahead for school and after-school activities. The thing that no one told me, and honestly, I don’t know if anyone who wasn’t living with this disease could, is that for the rest of my life a part of my brain would always be thinking about my disease. Not just thinking – forecasting, planning, worrying, calculating, and guessing. Judging, criticizing, feeling guilty, and making big decisions in the moment about myself, my body, and the all-consuming, never-ending tightrope of blood sugar control.
The thing I’ve come to learn about living with a disease like this is that while it requires a lot of resilience and courage, the person living with a chronic illness doesn’t usually experience themself as particularly resilient or courageous. Those seem like luxuries reserved for someone who has a choice in the matter. Every moment, every hour, every day, you just get up and keep going. It took me a long time to realize that the grit that helps me survive also got in the way of me learning to hold space for my feelings about having this disease. It never felt safe to stop and be in my body and my feelings about everything that had happened because I was terrified that being present to those things would make me less resilient or make me not want to keep going. I learned how to disconnect from my feelings about having diabetes so well, I didn’t even know I had any.
It’s hard to say exactly where the guilt came from. Maybe the ‘why’ isn’t that important. I know it started early. I felt guilty that my diabetes affected my whole family. I felt guilty that my dad thought it was his fault because his mom had been Type 1 too. I felt guilty that it took me an entire month to become brave enough to give myself insulin shots, and that every day my mom had to drive to my school at lunch to do it for me until then. I felt guilty that my entire class at school had to spend 45 minutes watching a cheesy VHS tape about my disease so they could all understand why I had to poke my finger and take shots at my desk.
Guilt is discouraging to live with. It’s constant, it’s critical, and it’s exhausting. For me, guilt opened the door to shame. I once heard Brene Brown describe the difference between the two as guilt says, ‘I did something wrong’ and shame says, ‘I am wrong’. After a while, I wasn’t just feeling bad about the way I perceived others as being inconvenienced by my disease. I began to believe that who I was, the body I was in, was wrong.
I swam in an ocean of shame for most of my life, of believing I was wrong. Sometimes the waves crashed over me, pulled me under, choking me until I couldn’t stand it. Sometimes I was gently tossed around the surface. Whatever the size of wave though, the shame was the water I was swimming in.
In my life, I’ve had some really close calls. I’ve some extreme low blood sugars where I was incredibly lucky to survive, usually because a person listened to the feeling in their gut that something was wrong and took action. One night, I was driving home from the gym late after work. I remember exercising and I remember getting in my car. I remember that I didn’t feel low at all. Then, nothing. I woke up in an ambulance on the side of a country road a mile or two outside of town. I had driven somewhere far away from my home, into the shoulder doubling as a small ditch where I passed out behind the wheel. My car quietly idled for a long time before someone happened to be driving home late at night. She saw me, felt something wasn’t right, and called 9-1-1.
I honestly can’t remember exactly how many times someone has called an ambulance because I was too far gone to chew or swallow anything to treat my low. Where most people would feel lucky, I felt embarrassed and defective. I just wanted my blood sugar to be fixed so I could go be alone with my shame. I never took time after one of these experiences to rest and take care of myself physically and emotionally for what I’d just survived. I felt as soon as I physically recovered, it was time to get up and keep moving and apologize to whoever had witnessed my latest emergency.
The shame was with me always. It would find me when I needed to draw up a syringe or pull my pump out from under my clothes to bolus in front of anyone. It crept in when I had to eat fruit snacks from my purse while running errands. Every doctor’s appointment was a new chance to feel shame – shame about the disease I wasn’t managing as perfectly as the non-diabetic professional in front of me decided I should. Every low, every high, shame. What did I eat? How did I make a mistake with my insulin correction? Obviously, I didn’t care enough, didn’t try hard enough, wasn’t doing enough.
I discovered that the reasons I used to criticize and berate myself were just intellectual judgments masking the real source and target of my shame, my body. I believed she was broken and wrong and unpredictable. She failed me over and over. She didn’t always respond the same way to the same things, and sometimes she craved things that would send my blood sugar on a roller coaster ride. She had the audacity to continue being diabetic no matter how much I loathed and rejected her for it.
Shame is hard because it seems to come from inside. I thought I owned every unkind feeling and critical thought I had about myself and my body. After all, no one was telling me to believe these things. These were decisions I had made all on my own. The thing I wasn’t seeing was that I live in a culture that constantly tells us which bodies are worthwhile, which bodies deserve to be protected, and what is the correct way to have a body. That reality makes it really hard to see where the shame ends, and body stigma begins. Limiting belief, bias, hatred, and shame compounding and reinforcing each other at every turn.
I haven’t learned how to stop the guilt and shame. I’m not really sure that’s possible since I think those are feelings every person has from time to time. What I’ve learned to start doing is letting myself be with my feelings about this disease. I think about my 8-year-old self with a new tenderness and acknowledge how brave she was. I allow myself to wade into a new ocean – one full of feelings, waves that come and go, just needing a moment to be seen and felt. I practice letting myself feel resilient and brave for all that I’m doing and continue to do. When I catch myself being unkind when my body does what bodies do, I pause, and I start again.
I learned that my body, like all bodies, is not broken or defective. She doesn’t need to look or function any certain way to be perfect, valuable, and worthy of care and dignity. She doesn’t deserve to be berated when she responds to my best laid blood sugar plans like the complex miracle she is. When she’s hungry, I feed her. When she tells me no, I listen. When she craves enjoyment or pleasure, I am happy to give them to her. When I talk about her, I speak like she is a person because that’s exactly how I want to be with her. In a world that doesn’t see value in so many bodies, this is a beautiful act of defiance.
It took me a very long time to learn that my path to accepting and living with diabetes needed me to return to my own body. The disconnection from her that I began experiencing 26 years ago made it really hard to know my own self and take care of what I needed while living with this disease. The path to reconnection is messy. Sometimes it’s painful, sometimes there are big feelings. Sometimes it’s really uncomfortable to learn and practice a new way of being with myself over and over, only to have a moment where I forget everything I’ve learned. The beautiful truth though is this body was here all along, she was waiting for me the whole time. She wasn’t mad, she didn’t hold a grudge. She just continued being her perfect self while I figured it out. She’s smart. She is kind and creative. She’s passionate and curious. She has big feelings and opinions. She’s sunshine. She’s large and gay and exactly who I want her to be. She is home.