Endocrinologist Archives - The Diabetic Journey

“You Are Never Given More Than You Can Handle”

By: Amy Payne

“You are never given more than you can handle” — I have heard this many times over my life, and it has never really stuck until this past year. I was diagnosed with Type 1 Diabetes 36 years ago at the age of 6. I never really thought much about it thanks to my amazing family who never made me feel different.

The only thoughts I had were that I would likely have horrible complications and die young from my Type1 Diabetes. Besides those thoughts, I truly did not think too much about it. I lived my life to the fullest thinking I should live a big happy life now because my future was going to be bad and short.

As time went by technology/drugs improved greatly and after living a somewhat reckless no fear life through my late teens and twenties my diabetes changed. All of a sudden I could not feel my lows/hypoglycemia anymore and my no big deal Diabetes had changed.

After a few years of trying to manage the lows with my new husband we moved to Denver, CO and went to the Barbara Davis Center. They told me I had had Type 1 Diabetes for over 25 years and had most likely avoided any major complications (except for my eyes, etc). I started crying right there in the office. Endocrinologists had stressed my whole life the importance of tight control otherwise I would have complications.

They have since changed their way of advising diabetics as they realize the old way of instilling fear of complications did more harm than good. Unfortunately being from the generation of 1980 diagnosed Type 1’s and even after being told I have bypassed most complications I still would rather be low than high and to this day feel the same, ironically it is the lows that threaten my life now.

Let’s cut to 6 years later –

The cost of Type 1 Diabetic supplies have skyrocketed (the US insured populations out-of-pocket costs for insulin increased by 89 percent from 2000 to 2010 for insulin alone) and with the 89% conservative estimate increase of my insulin alone depression entered my life.

I lost it one day at the Barbara Davis Center- United Healthcare was forcing me to change from Novolog Insulin (that I had been on for approx 10 years) to Humalog Insulin (due to their contract with the manufacturer of Humalog, not for the best interest of their clients).

I was so upset because of the forced switch and how dare they when my Diabetes was so hard to control on a strict regimen and now you are forcing me to change insulin because of your financial interest vs my health best interest, I literally had a breakdown in the Dr’s office.

This along with the never ending increasing expenses to manage my Type 1 Diabetes just to simply stay alive seemed too much to handle and the happy and strong Amy had finally broken down after 34 years of being a tough Type 1 Diabetic.

Barbara Davis was amazing and helped me with my depression (by the way Type 1’s are prone to depression due to insulin is a hormone that we inject multiple times a day, the fluctuation of our blood sugar levels makes us feel bad, loss of sleep, stress and the 24/7 never ending demand of our disease). I also have an additional theory that the blood glucose testing numerous times a day or with a CGM every three minutes along with your A1C results contribute to depression in Type 1’s.

You are judged by a number constantly –

(You are high, you are low, you are good, you are bad). It is a constant number that gives a judgement on your control of a disease that is impossible to control and I firmly believe it does a number on your psyche.

I am sure Dr’s would agree with my thesis. It was a relief to know what I was feeling was normal, and it is okay to finally say you know what this is hard, I have a lot to deal with and guess what I don’t feel that great most days!

Yes it could be worse and I could have cancer but you know what Type 1 Diabetes sucks and is really really hard to manage. It is a very misunderstood disease, being confused with Type 2 and people thinking you caused this by eating too many candy bars vs the fact that Type 1 is an autoimmune disease where my body attacked my beta insulin-producing cells in my pancreas preventing it from ever producing insulin ever again.

The misunderstanding hurts –

You hear comments like you don’t look like you have diabetes and you know you can reverse it with diet. NO, you cannot! I am good today. I am tired. I continue to be strong and continue to fight Type 1 Diabetes EVERY SINGLE DAY!

Type 1 Diabetes builds character, strength, and maturity. Every experience, every interaction, no matter how bad it might seem, has the ability to shape you, to mold you, and to help you become the person you were born to be.

And if it seems that life has given you “a lot” to handle; it is only because it knows how powerful you truly are. It wants you to discover the courage, the wisdom, and the strength that lie deep within you.

Type 1 Diabetes does not define me — it has built my strong character to handle anything!

Feeling Judged With Diabetes

Dealing with diabetes is more than just a number. It’s more than an A1C result, a blood sugar reading, or the amount of carbs I’ve eaten throughout the day. It’s the endless minutes, hours, days, and years that I’ve been battling this disease.

If diabetes wasn’t hard enough—I often feel shame or guilt for how I manage my diabetes. I get the sense of anxiety and nervousness before going to an endocrinologist appointment. As if I have something to prove, and I’m needing acceptance.

It’s a look—or unspoken judgment that is presented. I feel uneasy and withdrawn—thinking to myself that maybe I’m not doing as great as I thought I was. Being told what I could be doing better, rather than all that I am doing right.

I think it’s a lack of communication and understanding. I feel misunderstood and judged with diabetes. I know that my health care team work towards helping me, but I sometimes feel like they don’t understand me. It’s one thing to be educated in something, but it’s another to be truly in depth with it.

Don’t get me wrong—I take a huge part in this as well. There are ways I could better communicate to my endocrinologist and health care providers. After all, there’s no one else who knows my diabetes better than myself. I know what works and what doesn’t. It’s been a lot of trial and error over the years. What’s great is when I can find a doctor who is on my team and we work great together. They understand where I’m coming from—while I can correspond with their recommendations.

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By explaining that I’m trying my best but maybe could use help in certain areas.

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Even when trying my hardest my efforts don’t always seem to show.

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Why I don’t wish to try a certain medication and why I’m avid about it.

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That having different views or ways of doing things doesn’t mean “noncompliant”.

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How I’m feeling a certain way and that it’s okay to feel this way.

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That sometimes just by having a solid conversation, helps ease my mind a bit. Hearing that I am doing a good job makes all the difference going forward.

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Receiving some appraisal for being at this appointment, that I care, and to make me feel a little better leaving.

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Feeling less judged with diabetes and being understood by my physician helps my diabetes management which ensures a better me. While I do need their expertise and care, I also need myself in this more than anything. I know in the end it will be me—that will get me to tomorrow, next week, 5 years, 10 years, 30 years down the line. I know what I’m capable of, and how far I’ve come. Nobody knows that but myself—that’s all that really matters. In this journey, I’m my own captain, leader, worst enemy, fan, advocate, everything.