Chronic Self-Care: The Singular Revolution of Managing a Lifelong Illness

 

Taking my mind back to the day I was diagnosed with Type 1 diabetes is a dream-like experience. Some parts of the day are so vividly engrained in my memory and others are a complete blur. Perhaps the strongest memory I have of that day is not a vision – but a feeling. The feeling of my life being radically changed and having absolutely no control over it. I entered the doctor's office as a free-spirited, angsty, ambitious 16-year-old, and exited the hospital with a bag full of needles, grief, and disbelief. I’ve always been a sensitive loner, only really opening up to my mom on very seldom occasions. I didn’t have a lot of trust in people growing up and was quick to get hurt and feel pain. The only way I knew how to cope with my diabetes diagnosis was to emotionally disassociate; I couldn’t handle the idea that my freedom was forever taken from me (or so that’s what I thought.)

 

The emotional impact of living and being diagnosed with a chronic illness is underestimated, to say the least.

 

I spent the rest of my high school life hiding my disease and isolating myself. I didn’t want to be treated differently and I didn't want to have to talk about this new thing I had (largely because I didn't know how to talk about it). I would spend the next 4 or 5 years not really talking about Type 1 diabetes to many people, following doctor's orders, but never taking an interest in my disease beyond that. Type 1 diabetes already required 24/7 care and robbed me of many joys and freedoms I had before, so I didn’t really want to think about it any more than I had to. It interrupted my ability to grow and inhibited my ability to trust. My personal resistance to change eventually led me into a dark spiral, which then led me to question my own self-worth. I felt like my human existence was being defined by the numeric value of a test result or glucose meter reading.

 

I slowly realized that there were limits to how much information or support my diabetes specialist could give me, so my own journey for a better life began. I wanted more freedom and better management so I could do more things without letting diabetes get in the way.

 

I started consuming every bit of Type 1 diabetes information I could get my hands on. I read books, articles, tried different diets, started reaching out to the diabetes community, and eventually started sharing my knowledge through this blog. As I started to understand more about Type 1 diabetes and connecting with others, I simultaneously started to feel so much freer. The small amount of control I was able to gain over this disease that controlled me for so long was like taking a breath after being underwater for years.

 

It made me realize that I was strong and capable…and it gave me perspective... I was always strong and capable.

 

From the day I was diagnosed, I was strong. I woke up, I went to school, I carried on living.Getting through a day with a chronic illness is a victory in itself. There’s no manual, no set of guidelines to follow, some days will be so hard and symptoms will act up, some days will be

easier, but regardless of the ups and downs, every day is a victory because we show up. Beyond the recognition that my existence in itself is a radical statement of self-care, there are some everyday, practical things that have made my life with diabetes a bit lighter and freer!

 

Here they are:

 

1. Personal Time

Giving myself time each day to feel whatever I want to feel has been very important to my

emotional healing and mental health. To listen to my inner voice without judgment and to graciously give space to my thoughts. To feel the day and my body and my emotions in the most welcoming way I can. This time doesn’t have to be structured, but 10-20 minutes a day of not doing anything but releasing emotions and breathing is extremely healing. The more often you do it, the easier it will be to understand yourself and your reactions to things. The busier the day is, the more important it is to take this time. I often feel compelled to write in a journal, and that’s a practice I would encourage everyone to do if they feel the urge! Starting with just 3 minutes is a great first step. Keep it small and simple, and know that you are worthy of that time for yourself.

 

2. Organization

Make the one-time effort to sort through and organize all your diabetes supplies! This way,

when you need to get supplies, it doesn’t feel like an annoying task to have to go through

everything time after time. Having all of my medication organized has helped me get rid of the unnecessary negative associations with the material/physical representation of Type 1 diabetes. This doesn't have to be as complicated as ordering special dividers and drawers, I personally use suitcases for my supplies and my old travel pouches to separate things!

 

3. Community

Find other people living with Type 1 diabetes. It’s quite rare to meet someone living with Type 1 diabetes in the “wild”, hit it off, and form a lasting friendship haha! But the impact and comfort that comes with having a close friend who has Type 1 diabetes can’t be understated.

Knowing you have someone to talk to who just ‘gets’ the struggles (without a detailed

explanation) is a beautiful thing. Go online and meet people through forums, on Instagram, Facebook, etc. T1D’s tend to be friendly and welcoming – so if you see someone posting about T1D who also has some cross over interests with you like music, food, dance, art, sports, then reach out! Friendships go two ways and I’m sure it would be comforting to for them as well.

 

4. Advocacy and Education

Doctors are there to help you be your healthiest, but this is your diabetes so it’s important to have good communication and for you to ask for what you need. Prepare for your appointments with questions and research to make the most of your time and theirs. And make sure they take you seriously. Educate yourself on the best tools and devices for your needs. I personally didn’t want an insulin pump for so long until I did some research on my own and read other people's stories online about their experiences - and now my management and lifestyle are better because I have one. Another device that has improved my personal management and lifestyle even more than the insulin pump is the Dexcom G6 CGM System*. Having a continuous glucose monitor completely changed my relationship with Type 1 diabetes and how I conducted my life. Before I had a CGM, I was scared of trying new things, but after I had one, it felt like I could do anything again. Still to this day, it grants me a huge amount of freedom. I can continue to try new and exciting things and my diabetes management doesn’t have to suffer. I can go out dancing with friends, eat new foods, travel, perform, get lost in meaningful conversations and I can rely on the alerts to notify me if my levels are too low or too high, anytime of day or night. Wearing the Dexcom G6 has transformed what living with Type 1 diabetes means to me.

 

Navigating life with a chronic illness forces an individual to be strong, critical, and courageous. Day in and day out, the illness is present and fluctuating.

 

Living with Type 1 diabetes is a constant act of self-care and determination. What we do every day to try and mimic what a pancreas does is nothing short of heroic. And no matter how many times I feel like I have failed, I always remind myself that I am alive, my existence alone is a miracle and a victory, and I am enough.

 

***While this post is sponsored by Dexcom, the experiences and opinions mentioned here are my own. To be sure this product is suitable for you, always read and follow the instructions on the label. You can find out more about the Dexcom G6 CGM system here.

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