Diabetes Blogs

Living with Invisible Conditions Beyond Diabetes (Part 1)

I understand your pain. I understand your anguish. Diagnosed with Type 1 diabetes at age 11, I have lived with this serious chronic health condition over 27 years now. For some reason, those first handful of years weren't so bad. I guess I was young and kids tend to be resilient. I wasn't diagnosed as a baby, toddler or young child either which makes things easier for me and the parent. My mom and dad did not make a big deal out of my diabetes and I think that caused me to not make a big deal out of it either. It was just something we dealt with in a responsible way, but didn't get too bent out of shape about this new way of life. At least this is the way I remember it.

I took my insulin, tested my blood sugars and my mom changed our entire family's eating plan to cater to the new Type 1 in the family. I also don't think there was as much of a focus on tight blood sugar control in the 1980's and 1990's. And I certainly didn't have a Dexcom continuous glucose meter (CGM) pointing out all my faults!

I played on the tennis team in high school. Dated a lot. Had boyfriends. Went to prom. Hung out with friends. Went to sleepovers. Started working at the age of 16. Left home to attend a university in another state and live in the dorms at age 18. My diabetes never got in the way of much of anything. I was still Cynthia and I had diabetes. It was never my primary identity.

In this two-part series, I focus my writing on those who like me, balance living with Type 1 diabetes among one or more serious chronic health conditions. Conditions that do not improve even short-term by going on a walk or taking an injection, but carry on year after year, severely affecting not only the quality of one's life, but can be life-threatening.

This article may make me unpopular with some, but it is my story. I handled Type 1 diabetes well when that was all I dealt with, but now there is so much more to the picture. If Type 1 diabetes is your sole health concern, I understand it can be a lot to deal with and a big burden.

Yet the lens through which I see the world feels different. The body I live in has many more demands placed on it. This changes everything. Even the level I care for my diabetes. And how much more serious and disciplined about my health I have to be (It is a rare day I miss any exercise! And this is just one way I have to be so strict about my health...).

All of the emotions I go through when I'm feeling burnt out or upset about my health are magnified and probably seem stronger and way more intense. I am intense in general, but my complex health and all I am challenged with and have worked my way through do not dampen this quality from within that shines so bright and fierce, growing stronger with each passing year.

Sometimes this concerns me. Not only does it make me feel different than most everyone I know, but a number of parents with young Type 1 children follow my blog to get a glimpse into what life might be like for their child someday and to understand a bit more from an inside perspective about the Type 1 world. While they are learning about my life as a Type 1 and how I do my best to live well with peace and joy, they are also learning about way more than what life is like with Type 1 diabetes. As Type 1 diabetes is just one piece of the puzzle for me. I hope I haven't scared them too much! But I'm not willing to hide who I am to please others or make things easier for them. That is not in my nature.

I truly wish Type 1 diabetes was all I dealt with. Of course living with no health conditions would be the best! I do not say this to be mean or a jerk. But it might sound harsh and I'm sorry for that. It's anything but an easy ride when Type 1 is your primary health concern. I do not like Type 1 diabetes any more than you do and I was reminded again this morning all the ways diabetes can negatively affect many organ systems in our body (even with good control) as my functional medicine doctor reviewed lab work with me, trying to get to the bottom of some symptoms I've been experiencing. When I asked why the lab values were not in range on some tests, she simply said "Your diabetes." Not pleasant to hear.

So for those of you who think Type 1 is really hard, I get it. It's super hard. It's relentless and can be maddening in that even if you do everything right, it is so easy to mess up. 27 years later and it has only gotten harder for me to live with and more difficult to control. Blood sugars are finicky. And so is my body. Just yesterday after having fantastic blood sugars all day, I woke up high with a 240 mg/dL, unknowingly being high all night after accidentally not giving enough insulin with a small bedtime snack... That hasn't happened to you before, has it?! ;)

A gift from a dear Type 1 friend.While many see me as a "Type 1" above all else as that is the condition that is most obvious I suppose, a fairly big part of me does not easily fit into this box. I live with multiple invisible health conditions. Although most cannot tell this by looking at me... Besides the black bags under my eyes -- an unwanted visitor that shows more darkly on some days than others. And the CGM I have clipped to my right pant pocket or waist 24/7. Or one of the many needle pokes of my day you might see either through a finger prick to test my blood sugar or an insulin injection. Or you might catch me dozing off to sleep sometimes during a church sermon.

The list could go on about the ways my health really does peek through to the world. But most people most probably do not know anything is wrong with me on a fairly profound physical level. And even the ones that do often just see my diabetes while forgetting everything else I deal with quite severely at times. They compare me with other Type 1's they know and wonder why I'm not okay or handling things like their friend, patient, relative, etc with Type 1.

It is infuriating being compared with high achievers and inspiring individuals who have accomplished great victories with Type 1 and just other Type 1's. Why? Because the same expectation is turned back on me. I'm met with judgment and criticism because I have struggled to succeed in the same ways, therefore something must be wrong with me. No two people with Type 1 are the same, especially when living with health challenges beyond Type 1. Apples to apples are not being compared. They are tough shoes to fill with unreasonable expectations given my set of circumstances. It hurts and feels unfair.

People see how I look on the outside and assume I'm fine. Or maybe they might know a thing or two about one of my conditions from something they read or someone they know. This doesn't mean they know at all from the inside what it is like to live with each of them. And how these conditions too, like diabetes, affect so many important decisions. How I schedule my life and what I do every day. What I can get away with and what I can't.

I know a number of Type 1's who were diagnosed as an adult. Some are very private about their diagnosis and do not want anyone to know about it. This confused me for a while until I made the connection recently that this is exactly how I am in relation to some conditions I live with -- the ones where I was diagnosed as an adult. I keep them private as can be. Very few people are privy to this information.

They do not understand the severity anyway. And their lack of reaction and response and often lack of understanding can be much more hurtful than just keeping what I deal with to myself and opening up to a few people I am close to that I can trust. This is what I've learned the hard way. And people can be extremely judgmental and critical. They have their own set of standards for their body and inappropriately project those same standards onto others. Yet how could anyone else know unless they were me what it is like to live with with all these unique conditions in my body? All of our bodies are so different and as I mentioned, even among those of us who share the same Type 1 diagnosis.

In the last 10 years I have been diagnosed with five more health conditions. Did I really just type the

number five?! Geez. Heartbreaking. This is on top of the three I already had (Type 1 Diabetes, Endometriosis, Hypothyroidism). Eight is my favorite number but I'd rather have it describe anything other than the amount of challenging health conditions I live with that affect me on some level, some more than others, every day of my life.

This number is not including the depression I worked painstakingly hard to heal from (at some point I will write about this further). And I might be missing something. It gets hard to keep track. I have actually never added them up before and it makes me sad.

It can be disheartening when we are always trying to be so strong and fighting for our health to realize we are more broken in some ways that we'd ever care to admit... to ourselves or others.

Especially an article broadcast to the world.

I have a favor. Please be gentle with me and still see me as Cynthia despite the health challenges I endure. Thank you.

I will keep to myself what most of these other health conditions are, at least at this point. Just because it's an article about my health does not mean that every nook and cranny of my body needs to be exposed! Some of you know, especially if you follow my blog's Facebook page, that one of the other conditions I live with is multiple severe food intolerances. I'll also share my story about this sometime -- it feels at times that there is so much to write about!

And maybe sometime in the future I will feel called to advocate about one of my other afflictions and vulnerably share my voice to help others feel less alone. Or possibly give hope by educating about ways I have healed and lessened my symptoms through holistic modalities (This is already in the works! I keep fighting. And while still challenging, things do keep improving. Holistic all the way baby!).

The list of conditions I mention unfortunately does not include the two injuries I am working terribly hard to heal as well -- one of them going on over 3 years now (frozen shoulder) and the other a year and a half (plantar fasciitis). Both made worse by my diabetes and more difficult to heal. And both keep me very busy with physical therapy appointments and daily exercises to stretch and strengthen.

I would like to point out that none of the conditions I live with are a result of the level of diabetes control I've maintained or any kind of complication from diabetes. Although each of the conditions I live with are made much more complicated and difficult to live with and heal from because of a serious systemic condition like Type 1 diabetes. While I used to have a mild case of neuropathy in my feet that would appear occasionally, I have had no symptoms for the last several years. Just realizing now how long it's been absent as I type. Woohoo!! :) Another cheer for holistic/integrative medicine!

Next week in Living with Invisible Conditions Beyond Diabetes (Part 2):

How living with diabetes and other invisible conditions impacts me on a deeper level in various parts of my life and relationships and what I do to cope and live my best with wellness and peace.


I am dying to know. How many of you also live with health conditions in addition to diabetes? Are they related to your diabetes or no connection like mine? And how long have you lived with the big D (diabetes)? If you are comfortable, please share below. I believe opening up this discussion breathes life and gives light to a topic that could really use some more discussion.

This article took a lot of courage to write. Thanks so much for reading and hope to see you back next week for Part 2!



In Peace & Wellness,

Cynthia

 

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