diabeticsdoingthings

I’ve been living with type 1 diabetes for over 25 years, which is many more years living with it than without it. My diagnosis story isn’t as traumatic as some others in the community, my levels were from what I’ve been told around 29-30mmol/L (yes I’m from the UK and we use mmol/L so that’s roughly 522 mg/dL), I never lost consciousness and was never in a coma. I am very fortunate. Like most people living with diabetes, my biggest challenges were yet to come.

I was diagnosed at 10 years old (you can work out how old I am right?) and my biggest challenge were my teenage years and early 20’s. It was a struggle, a really hard struggle. Looking back during that period I was experiencing what I now know as diabetes distress and diabetes burnout. (You can learn more about these conditions here). In that period, I was hearing from various healthcare professionals scare tactics as to why I needed to look after myself and what would happen to me if I don’t. Whilst these words were supposed to motivate me, they didn’t. Far from it. I was a teenager who thought I was invincible and these potential consequences were so far away and of course they would happen to someone else just not me. I lived my ‘best life’ or at least what I thought it was. That’s the thing with diabetes is that it can, if you allow it to, lull you into a false sense of security.

Diabetes and its associated complications almost come hand in hand. Living with diabetes you are always aware of the impact this condition brings in the short, medium and long term. Hypos, hypers, DKA, eye, kidney and foot problems, eating disorders, disordered eating, diabetes distress and diabetes burnout, nerve damage and sexual problems are all complications of diabetes. The conversation around the first three is quite comfortable but the others not so much. This needs to change.

You may be thinking what makes me qualified to say that the conversation needs to change? What does he know about life with complications? I’m currently living with diabetic retinopathy (I can’t remember when this was first diagnosed) I’ve had multiple laser surgeries in both eyes and I’ve had vitrectomy surgery in my right eye. In 2013 I was diagnosed with Chronic Kidney Disease and in 2018 I was very fortunate to receive a kidney transplant. I have some lived experience of living with complications. Ok so I live with complications so why do we need to talk about them?

This is where it gets interesting. You may be reading this and be living with complications or you may not. That’s fine. My experience of being diagnosed with complications meant that I felt like I had failed some sort of diabetes test. I felt alone and also like a failure. All of those warnings I received years ago, the scare tactics were all coming true. I initially thought to myself if only I had listened at the time. These same thoughts came about when I was diagnosed with Chronic Kidney Disease. That feeling of being alone hit like no other if I’m honest. Imagine feeling out millions of people worldwide living with diabetes, you are the only one who has complications. It makes no sense but at the time it did. I’ve spoken to others and they’ve said something similar. This is why we need to speak about complications because there are others out there like me and possibly like you.

We are always told it is good to talk and it is, it really is. So why not talk about a subject that many of us living with diabetes, regardless of the type, face on a daily basis? There’s a deep-rooted stigma attached to someone have complications. They didn’t look after themselves, they don’t care about their life and so on. This can be found in the diabetes community.

I believe that even though many aspects of the community is great, we as a community, where all members face these challenges should be proactive in having these conversations in a safe environment because none of us are excluded from developing complications. Diabetes is relentless and doesn’t discriminate. To create this safe space means us as a community taking back the power from negative narratives and stigmas and having open and honest conversations. I’m in no way saying that anyone living with diabetes shouldn’t be doing their best every single day although some days our best is better than others. I’m saying that normalizing the conversation means that if you are either living with or diagnosed with complications that you don’t feel alone or feel like you failed a test. You instead know that others have faced what you have.

The results? A community that openly embraces all aspects of life with this relentless condition that none of us asked for and an understanding that you are never alone on this journey with diabetes.

“Y tan joven?” (Why so young?) - this is something I often hear when family members or family friends find out I’m type 1. Growing up in El Salvador was never easy, but I loved it. I was never that child that got sick often (besides my unknown pancreatitis episodes that happened a few times a year) - if anything, people thought I was healthy because I was chubby. Chronic illnesses were never (and are still) talked about. As a child, I thought chronic illnesses only happened to “viejitos” (older people) - but never it occurred to me that it could happen to children, “normal” children, like me. Illnesses have always been talked about with such worry in my family, that having one, almost felt like you were sentenced to death.

I remember going back to El Salvador five years after I had moved to San Antonio, Texas and having a physical done - you know, because it’s mas barato (cheaper). I recall my parents talking amongst each other about my blood results. I heard “que tiene el azucar alta” (she has high blood sugar) and didn’t really think anything of it. No one did. I came back to San Antonio and things were fine - until I turned 14. I remember that day so well; before I went to bed I ate 3 starbursts - just 3. Next thing I knew, I was in a diabetic coma.

A few social workers, doctors, nurses, diabetic educators, and days later I still didn’t know what it meant to be diabetic. I was confused. Maybe in denial? And I don’t think my parents knew what was going on either - everything was taught to me in English. Coming home was interesting - I remember my mom clearing out the fridge and filling it up with vegetables. At that moment, I remember thinking “okay - so from now on I only eat vegetables?”. And that’s how it was for a few months, until it all fell apart. Being salavadoreña means pupusas, tortillas, tamales, pan dulce, atol de elote, riguas, pasteles, atol shuco - CARBS. A salvadoreño cannot have a proper meal without having two or three tortillas accompanied with rice, or beans - tell me, how can I make that low carb? Impossible. I started to fall off the “healthy” train and went back to my carb heavy diet. The weight started to pile on until people started to notice. “Estas gordita” (you’re chubby). Is all I would hear - but the thing is, not a lot of people knew I was diabetic. As I had mentioned, in my culture, my family, my roots - being diagnosed with a chronic illness is like being sentenced to death. No one talks about it.

For a while I thought my parents were embarrassed to tell people I was a type 1 - which at some point made sense. Why would anyone want to tell all their family and friends that their child is diabetic and that people may think they fed their child too much sugar? And be judged? Yeah - I get it. Then, it didn’t make sense. Being newly diagnosed, going through puberty, and living in a salvadorian household, where feelings sometimes don’t exist, was hard. I had never felt so alone. I then started to not talk about it - to the point I pretended I didn't have it. I was never officially diagnosed, because again, feelings don’t exist sometimes - but I’m sure I was depressed and had developed an eating disorder. It got really bad that I stopped using insulin. I was so obsessed with the thought that “the more insulin, the fatter I will be.”

That, of course didn’t end well. My parents never really found out - if anything, using less insulin was great! It meant I was getting healthier - and everyone else thought so too. Now, at 25 years old, I sit here and realize this was all due to the lack of education and resources. I don’t blame my parents, because truly, I don’t think any parent is prepared (especially immigrant parents who don’t speak english) to come to this country to have a child diagnosed with a chronic illness. Not only that, but I didn’t expect my 14 year old self to teach them everything there was to know about diabetes (in addition to translating important documents that you have no idea what they’re saying). As years have gone by, I have noticed how resources are very limited in the hispanic/latine community. People are mainly told “Hey diabetes is bad - don’t eat tortillas and bread” and that’s it - at least that’s how it’s been with my dad who was diagnosed with type 2. Health insurance is expensive and almost non-existent for those working in blue collar jobs. Prime example - my mom has been working with Chick-Fil-A since we got here and has never had health insurance. My dad does have insurance, but it's mainly a “just for show” type of insurance - super limited. So, with that - how can anyone expect them to raise a child with diabetes or any kind of chronic illness?

I will be cliche and say that if I hadn’t gone through all these things, I wouldn’t be who I am today. If I could see my 14 year old self after diagnosis, I would tell her that I’m proud of who she is and who she will be. That I’m proud of her not giving up. Proud of her not letting a disease define her. Proud of how strong she is.

- Laura Rosales