When no one was looking, I’d slide my insulin pen up my sleeve and excuse myself so I could go inject in secret. I’d fumble through my handbag under the table, supposedly looking for something, when in fact I was pricking my finger to check my blood sugar. I’d step outside for fresh air when I felt “faint” so I could scoff jelly babies to treat a hypo. In my opinion, nothing was worse than someone discovering my secret: I have type 1 diabetes.
Hiding diabetes.
Keeping diabetes hidden was more important to me than managing it. Looking “normal” was more of a priority than feeling well. And, it was exhausting. I thought that hiding my diabetes would allow others to know me for who I really am rather than a health condition. But the thing is, I do have a health condition – a chronic one that demands a lot from me mentally and emotionally. Keeping it a secret only made me feel isolated, because nobody knew the ‘real me’. Diabetes is a huge part of my thought life and it affects every decision that I make. So by hiding it, I was actually hiding part of myself.
Although I didn’t realize at the time, it was shame driving all those feelings and behaviors. Shame tells you there’s something wrong with you. It convinces you to hide parts of yourself so people won’t judge or reject you. Shame lies to you and says it’s the worst possible thing for anyone to discover the real you, because if they did, they wouldn’t like you.
Not disclosing my diabetes didn’t seem harmful at the time. Instead, it was a temporary escape for me as I could pretend I didn’t have it. In reality, it was constantly on my mind, especially when working so hard to hide it. This came at a cost to my mental and physical health, and no doubt it was one of the main factors that drove me into diabetes burnout — a state of mental & emotional exhaustion.
Diabetes burnout.
Managing diabetes had become overwhelming, and it wasn’t long before I knew I needed help. Since I didn’t know any adults with type 1 diabetes, and didn’t talk about it with anyone else, it was my diabetes team who I’d have to ask, but I just couldn’t do it. My past experiences with healthcare professionals had me convinced that I would be dismissed. Going to a medical appointment felt like being sent to the headmaster’s office.
“Surely I should be able to manage diabetes by now. But I can’t, so I’m a failure. I don’t deserve help because it’s my fault I’m in this mess.” That was the voice of shame saying it was my fault and that I was a worthless human for not being able to do the job of a pancreas 24/7.
Then, there were the conflicting thoughts and feelings of guilt: “Diabetes is dominating my life; I wish I’d got help sooner. I’m a fake, I’m lying to people I love. I’m damaging my body and ruining my future.” Guilt said I was irresponsible for not taking care of myself and for lying to my friends, and this only fed into the shame cycle more because I felt like a horrible person.
The thing about shame is that it convinces you you’re the only one. Shame isolates you and it thrives in secrecy. But the actual truth is, you’re not alone. You’re not the only one thinking and feeling these things. So the way to combat shame is to talk about it. (Which, by the way, shame will tell you is the worst and most difficult thing ever.)
Coming out of shame.
So eventually, feeling sick with anxiety, I did it. I told my team I was struggling. And to my surprise, they already knew. In fact, they’d known for years, but they couldn’t help me until I wanted their help.
Since then, it’s been a step-by-step journey of choosing vulnerability, facing my fears, and entrusting my diabetes team with some of my biggest diabetes secrets — things I thought they’d judge me for, criticize me for, or even laugh at. Instead, I was met with sincere compassion and empathy, along with a commitment to support me the best they could.
Over time and through lots of talking, I’ve been processing burnout with my team and exploring the thought patterns and emotions that come with diabetes. I’m still learning to accept diabetes and manage the emotions that come with this, and that’s okay. There isn’t a one-time fix or a blueprint for living well with diabetes, because it looks different for everyone.
I’m hardly the same person now, and can’t quite believe I now volunteer at diabetes events and help lead peer support groups. I actually enjoy advocating diabetes and mental health. Having experienced the cost of living in shame, I now want to help others come of hiding and to live their best life with diabetes tagging along, rather than diabetes dictating their choices. Coming out of shame doesn’t mean you have to wear medical devices loud and proud or advocate all the time, if at all. It means the reason for not disclosing your diabetes or your struggles isn’t from fear of judgment or exposure, but because it’s what’s best for you in that moment.
The diabetes community.
If you can’t talk to your team yet, reach out to the diabetes online community (DOC). Peer support is invaluable. At first, I joined anonymously, because I didn’t want to be known. But, it’s undoubtedly been one of the best things I’ve ever done for myself. Since befriending people with type 1 — both online and in person — I’ve found joy in supporting others, a relief in being understood, and I’m empowered to keep going. Find your tribe and I promise, you’ll see you’re not alone. Of all the places, this is where there should be no shame.
In the diabetes community, you are seen and known. You are understood and accepted as you are. You’ll find that you’re not the only one who struggles sometimes. Just knowing that in itself is empowering, and it gives hope for anyone carrying the weight of guilt and shame: it doesn’t have to stay this way.
#showyourdiabetes
Nay Parnell @winsandneedles