With that said...
Diabetes sometimes comes with "add-on" conditions; meaning that the prevalance of some conditions (such as depression, anxiety, hypothyroidism, or celiac) is statistically higher for those with diabetes, versus the general population.
Today marks the launch of a new community surrounding the topic of diabetes and anxiety, aptly named Anxious You Anxious Me, run by Alexis of "The Chronicles of D-Boy and Ribbon". To help jumpstart the conversation you'll find a group video on the You Can Do This Project site today in which Alexis, Hallie, and Kate share their personal stories and struggles with anxiety, and encourage others to talk about their own experiences.
I'm honored to share this post from Kate who is bravely sharing how anxiety affects every bit of life, including diabetes. It's a battle she's still waging, and I hope that talking about it is helpful. No one should have to deal with this alone.
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"Peeking Through The Keyhole"
I was diagnosed with Type 1 Diabetes 7 years ago, on the 4th of October, 2005, at the age of thirteen. My journey with anxiety started roughly around a year and a half later, in the summer of 2007, when my Grandfather died. I called this blog post Peeking Through the Keyhole because anxiety is a very difficult thing to explain to somebody that has never experienced it before. So by my writing this, you will get a ‘keyhole’ view, a small portion of what life is like for somebody with anxiety and this is my story.
I was 15 years old and just finishing my third year in high school when my anxiety symptoms started. I became very cautious about who I started to hang out with. I always made sure there would be a friend in our group that knew how to help me if something went wrong with my blood sugar. I did this subconsciously at the time, not knowing the reason. I would avoid situations which I deemed ‘unsafe’ such as: Spending time with people that didn’t know one thing about diabetes. I would start snacking more ‘in case’ I had a low blood sugar. This particular feeling is difficult to describe. I just had this ‘feeling’ that something awful was going to go wrong with my blood sugar, or with me in general, and that I would die. I was terrified much of the time, then when my Grandfather died suddenly that summer, things rapidly spiralled out of control.
I remember driving home from school one day and having a conversation with myself in my head about my diabetes care. I was able to calm myself down when I didn’t take my insulin or test my blood sugar, because I knew that ruled out the possibility of me passing out. I remember telling myself this: “You either keep your sanity and be sick, or be healthy and insane.” I opted for keeping my sanity and being sick. That is where the story begins. From that day on, things got intense. I stopped taking my insulin. Checking my blood sugar was out the window. Not a chance. I would die if I did any of those things, surely.
To make a very, very long story short – here are the main issues I faced on a daily basis:
I couldn’t let my Mam leave the house without me. If she tried to, I would physically drag her arm, screaming and crying, not letting her leave unless she brought me with her.
I hated driving in the car. I was afraid the car would breakdown and we would be stranded. I was afraid we’d be left there for hours and I’d have no food or insulin and that I would die. I never let my parents drive under a half tank of petrol – and if I got scared and they wouldn’t pull the car over – again, I would physically yank their arm off the wheel in order to try and get them to start driving.
I couldn’t stay in school. I lived a twenty minute drive from my school which was nothing. I loved school and I generally felt very safe there. I had a great relationship with my friends and teachers and I loved everything about it. But for two years I couldn’t stay in school at all unless one of my parents were outside in the car. All day, in all weather. I knew then if anything happened to me, I could just run straight out and be with them in seconds.
Sleep was non-existent. I would constantly stay awake and eat. I didn’t gain any weight because I didn’t take any insulin. If I did fall asleep, I would wake up panicking, darting around the house looking for someone so that I could calm down and know that I wasn’t by myself in the house.
Those are just day to day things, things that ‘normal’ people do. Now throw Diabetes into the mix. If I saw a blood sugar below 16 mmol/l (320 mg/dL), I would have a massive panic attack and drink glucose drinks and disconnect my pump. If my eyes started stinging or if I realised I wasn’t thirsty, I’d have a panic attack because I knew my blood sugar was coming down. Somehow, I never once went into DKA. I knew when ketones were forming and I would take maybe 1 or 2 units to take the edge off so I didn’t have to go into hospital. Most days I went fully disconnected from the pump. That went on for about four months before my parents realised. After that, I forced myself to keep it on because they made sure I had it on all the time – and I realised how much better I felt when I was getting some insulin.
Those are just day to day things, things that ‘normal’ people do. Now throw Diabetes into the mix. If I saw a blood sugar below 16 mmol/l (320 mg/dL), I would have a massive panic attack and drink glucose drinks and disconnect my pump. If my eyes started stinging or if I realised I wasn’t thirsty, I’d have a panic attack because I knew my blood sugar was coming down. Somehow, I never once went into DKA. I knew when ketones were forming and I would take maybe 1 or 2 units to take the edge off so I didn’t have to go into hospital. Most days I went fully disconnected from the pump. That went on for about four months before my parents realised. After that, I forced myself to keep it on because they made sure I had it on all the time – and I realised how much better I felt when I was getting some insulin.
And of course, I was lying the entire time about everything, leading people on to believe I was doing fine and that I was healthy. I never had any energy, I always just wanted to sleep, and I constantly peed and downed water.
In 2009 I developed an incredibly painful abscess. On my butt. You heard. It wasn’t pleasant and I had to have surgery. The exact cause of the abscess was: “Uncontrolled Diabetes.” My blood sugar was so high all the time that my body couldn’t cope and this abscess occurred. I spent a couple of days in the ICU after having surgery to remove this abscess, and because of its size and depth, I very nearly almost died. It was the most painful, frightening experience I have ever been through.
Fast forward to now, 2012. Things are better for me now. I realised that I had a problem that I couldn’t fix all by myself. I sought help from counsellors, psychiatrists and doctors. I started being truthful and telling people I was struggling and couldn’t cope. I met great, wonderful friends in the DOC that, to this day, are the reason I am sitting here typing this. I am not where I want to be right now.
For the most part, my day to day life, anxiety-wise, is very manageable. I still have my struggles with diabetes. I rarely test, and I just take enough insulin to keep me feeling somewhat functional. I am working (albeit from home) socialising a lot more, and enjoying life more, looking forward to tomorrow. I am starting to believe, thanks to friends, that I have the strength to beat anxiety. This is why we created Anxious You Anxious Me. People don’t talk enough about anxiety. I have laid it out here because I know I am amongst friends. A lot of times, people think that if you suffer from anxiety, you are being dramatic or looking for attention. But that is not the case.
The point I want to get across strongly to you is: I’m not lazy. I’m not suicidal. I don’t want to die or be sick. The anxiety has this grip on me that I really take out on my diabetes care. Outsiders and some friends think I’m being a lazy diabetic by not testing and eating junk. But really I’m doing it to get through each minute because sometimes I just don’t know what else to do.
For some people, anxiety is just as real and prominent as diabetes. Sometimes, anxiety wins, I eat that bar of chocolate or that regular coke and don’t bolus. But I can relax and feel safe. Sometimes, diabetes wins, and I test and bolus for my meal and tell myself it’ll be alright. It’s something else I live every day with and try to juggle amongst other ‘real-people’ life situations. I’m glad that now thanks to the DOC, I don’t need to do it alone.
Now, you don’t have to do it alone either. If you have anxiety, talk about it. You’re not crazy, you’re not delusional, and you’re not sick.
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Thank you, Kate, for having the courage to put out in the open something so personal.
It takes great strength and courage to open up and share these things, and you have that in spades, Kate. Thank you for sharing. Love ya!
ReplyDeleteThanks for sharing this, Kate. It means so much.
ReplyDeleteIncredibly brave post, Kate! I'm glad to know you and thanks for sharing this
ReplyDeleteKate, thank you for sharing your story--I know it took a lot of guts, but the only way the world will learn to see things differently is to see that there are real, honest people behind these struggles. Simply by sharing your story, you're helping those of us WITHOUT diabetes to learn more about how it can be to cope with not only D but other things simultaneously.
ReplyDeleteThanks for sharing your story with us. :]
<3
This post resonates so hard, probably with more people than we realize.
ReplyDeleteThank you Kate for your honest and courage, and thank you Kim for posting!
Kate, thanks for sharing your story. And the last sentence is 1000 percent of validation for anyone who is struggling right now. Thanks.
ReplyDeleteHow incredibly brave you are to open up and share that with us. Thank you so much for talking about such a difficult subject. I have anxiety also but not to the extent you do. You said "I would start snacking more ‘in case’ I had a low blood sugar." I know all about that. I have higher fasting numbers because I'm concerned about going low at night because most of the time I am alone.
ReplyDeleteThank you Kate for your honesty.
ReplyDeleteAmazing courage and strength! Thank you for sharing your story; it required a couple of kleenexes here. I occasionally deal with sadness due to lots of things but anxiety isn't something I've been saddled with. However, I have a niece who suffers dearly from anxiety so I know second-hand how difficult it can be and how misunderstood it is. Thank you for your honesty and willingness to help others. You rock!
ReplyDeleteWow. What courage you have, Kate. I'm so proud of you for sharing this, and for working towards being healthy AND happy. I'm glad you've found some support through others in the DOC like you, and that you're all working together to help even more. Amazing.
ReplyDeleteMost days I went fully disconnected from the pump. That went on for about four months before https://www.rx247.net my parents realised. After that, I forced myself to keep it on because they made sure I had it on all the time – and I realised how much better I felt when I was getting some insulin.
ReplyDeleteThis is why we created Anxious You Anxious Me. People don’t talk enough about anxiety. I have laid it out here because I know I am amongst friends. A lot of times, people think that https://www.rx247.net if you suffer from anxiety, you are being dramatic or looking for attention. But that is not the case.
ReplyDeleteKate - you stole the words from me. Living with anxiety is debilitating as is, and then add diabetes to the equation and we feel like our world is against us. Thank you so much for sharing. It's comforting to know I'm not the only one living with anxiety and diabetes. Take care!
ReplyDeleteThanks, Kate, for having the courage to share your story. I hope putting it out there somehow lessens some of the anxiety that keeping things secret often causes. I know how that can be.
ReplyDeleteMy T1 child has anxiety about germs. It started right around when he was diagnosed, and I thought it was how he was dealing with feelings about diabetes. But none of his anxiety has to do with diabetes germs---he's not worried about pricking an unwashed finger. Not at all. It's been more like...did his coat touch the super-annoying classmate's coat in the coat hooks area at school? Better wash off the germs. The annoying kid touched his pencil case; can it go in the washing machine?
ReplyDeleteAll of his anxiety boiled down to this annoying classmate's germs.
After reading this, I think the anxiety is a coincidental thing, not caused by the stress of the diagnosis.
I really admire you. Thank you for sharing this. Your story gives me chills. I want you to be able to take care. You deserve to feel better than this!
thank you kate
ReplyDeletethank you kim
you're helping people
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ReplyDeleteDiabetes is one of the very severe diseases in world. Diabetes has correctly been labeled as the “silent epidemic” – its non-dramatic, insidious and chronic nature often masks the menace inflicted by the disease through death, incapacitation, and negative impact on quality of life of patients as they spend years coping with their life-changing affliction. Your blog post is very informative describing about this disease. Kinesio tape
ReplyDelete