Learning to Love Our Diseases & Devices
By Erika | @Erikaarff | July 5, 2018
Learning to Love Our Diseases & Devices
Ten years ago if you had asked me to "show off my insulin pump", you would have found me running for the hills. Growing up and going through puberty and all those lovely changes is hard enough, but throw in a disability or disease that may or may not be visible, and you enter a whole new world of self consciousness.
The thing about body image is that there's so many factors that can lead us to positive body image or negative body image: how you were raised, who you were friends with, what city you lived in. All of these things are part of the equation and can be accounted for when we think about how we view our bodies. For me, becoming a Type 1 diabetic was a huge factor that led me to incredibly negative body image. Not only did I hate my body for "quitting" on me, but I also had the stigma of having the disease that was "caused by eating too much sugar."
Over my teen years (age 13-19), I really struggled with my body image. I would hide my diabetes so no one knew I had it - I hid my pump in my bra, and I would go days without checking my blood sugars if it meant I had to pull it out in front of people AND alongside all that, I also knew that there was a *really easy* way to lose weight through manipulation of insulin and proper diabetes care. I wasn't even big by any means!!! What I didn't realize was that my unhealthy habits were leading me down a dangerous path to diabulimia. It wasn't until I was 20 years old that I realized there was no shame in being different (read: UNIQUE AND A TOTAL WARRIOR!). I had spent so many years worried about what people were thinking of my devices and disease, that I had forgotten to check in on how I was viewing them myself.
I think a lot of us with chronic diseases and illnesses can relate to the feeling of having people stigmatize our conditions or have people stare at us because we have tubes/wires/chairs that the general public don't often see. To us, it is our norm but to them, its something completely new and different.
I want to share my top 3 thoughts that helped me overcome my struggle with showing my disease and my negative self image, and how I have been able to now come full circle and be so proud and confident while rocking my devices:
1. IT'S NOT YOU, ITS THEM: This stage was the hardest for me to learn and was one of the missing pieces when it came to body image and living with a visible disease. What I've ONLY recently come to realize is, the people staring or making comments are probably just scared or curious themselves. They put themselves in our position and they couldn't imagine anything worse than going through what we chronies' do. They stare because they are curious and this is something new to them. You know that saying that goes like, "Kids ask so many questions!"? It's kinda like that ... but for all ages: people will stare at things they are unfamiliar with and will ask questions (rude or not) if they don't know! In these moments it can be hard to overcome the fear of judgement, but I have learned to take the time to educate or to simply just smile back. It not only breaks their stare, but it shows them you are aware that they are intrigued. Say hi to them as they walk past! Ask them if they want to learn more! Or let them watch you take your medicine. Let them ask questions. This was hard for me at first, but I have honestly found that 99% of people will take you up on your offer and appreciate your openness to share!!
2. ME, MYSELF AND I: I wish I could remember who I had this conversation with, but one day I was talking to someone and they said, "Erika... did you notice that girl back there with the big mark on her leg?" (there was no girl after all) and I responded with, "WHAT? NO? Is she ok? I didn't see it...". And then it clicked - I was so wrapped up about what I was doing and what people were thinking of me, that I didn't even notice those around me. And it goes both ways. Most of the time, the people around you are ALSO feeling their own insecurities and don't have the time or the thought to look or compare to others. Others also can't tell what you are insecure or worried about - its only in our OWN heads! I'm not saying we should all find some insecurities within ourselves, but often times it is just the plain truth that we are all feeling self conscious about something or other! It began to give me some piece of mind, remembering that even those who we may see as "FLAWLESS" feel insecurities that we don't know about!
3. HARD TRUTH: The hard truth is obviously a harder pill to swallow but also a really humbling one. It's the thought process that we are-in fact- different. We might - in fact - look different than the quote on quote "norm". It's one that I tell people about and then 3 months later they come back messaging me saying how they hated me when I said it but now they realize its reality and it was what let them completely forget about the negative body image. It is the idea that this is our reality and we have two choices- we can either fight it or go with it! It isn't accepting that its FUN, or LUCKY or NO BIG DEALZ - it's the motion that we are understanding that this is what we have been given to deal with and we can either make the most of it or fight it for our entire lives. I'm not super stoked and accepting of it 24/7- HELL NO I AM NOT! But I think about all the times I hid my disease instead of having fun in high school. And how much danger I put myself in because I wanted to be like "the normal kids" and neglected my health. I think about how much stress I put my loved ones through while they watched me hate myself and my body because of something I COULD NOT CONTROL. Forgiveness was something I had to learn. I finally forgave my body and started working with it rather than against it. It was maybe the hardest thing to understand but once I did, I couldn't believe how differently I saw my body, my condition and my world.
Once I started working WITH my body, I actually and completely lost all my insecurities towards showing my disease. I didn't care about the stares, or the insensitive questions, or the comments because I knew that those who were inquiring were just curious, uncomfortable or unsure about it. I opened the conversations and showed myself and the world that we really aren't that different or incapable. We fight every single day to keep our body alive- and that is ACTUALLY AN AMAZING STATEMENT. If people knew how hard we work to be the amazing humans we are, they would be shocked! But they don't normally understand, and thats ok...because we have built these communities for those who do understand the struggle.
Please, love yourself. I promise you, life is so much more enjoyable without the fear or worry of what some strangers are thinking! Let them stare - show them how amazing you are! Dance, or sing and laugh and let them watch you... tubes, chairs, wires and all... take control of your happiness and self image! It will take time...(like maybe even years)... but you can get there!
I started a hashtag a few months ago - it hasn't taken off but maybe you will find it empowering like I do! When I post on my social media pages, and my disease is present in those pictures or videos, I use the hashtag #girlswithgadgets (someone please start #guyswithgadgets !!!). It makes me feel proud, but also shows my viewers that I am not afraid to showcase this part of my life and that I will not hide it in fear of what others may think or say about me!
Erika is a 25 year old Type 1 Diabetic warrior from Peterborough, Ont, Canada. When she isn't running her own business or working as a supply educator, you can find her latin dancing and traveling the world! You can also find her encouraging others to love themselves and to be kind to one another and has a strong passion for human rights and equality.