I have been changed by T1D

Julia Rose
Nov 15 · 6 min read

I have been trying to think of something to say about my experience with type 1 diabetes on World Diabetes Day this year. The truth is, as always, there is a lot I could say, but it would not be unique or profound because the experiences that many of us in this community face are similar. This isn’t to discourage what makes us individuals or discredit my own advocacy and life pursuits.

Surely, we are all experiencing separate paths, but there is a lot of overlap and intertwining that brings us together — much of which I find gratitude in. We aren’t so alone, and if we learn to connect and converse more, we’d discover we’re not so different. If we make the effort, we will realize similarities. It’s the risk of being vulnerable that holds us back from harmony, but we shouldn’t be so afraid of our communities…

We can all relate on some level, no matter how big or small the connection.

As I prepare to speak at a conference in California with Change.org next week, I can’t help but think of how the conversation around type 1 diabetes has changed in the past (almost) sixteen years of having this disease. It’s been an incredible evolution. Really.

When attending a JDRF research update earlier this month, I heard JDRF representation speak about the disease in the honest manner I wish I would’ve when I was a child, and I couldn’t help but think how I wish I would’ve accepted myself and my condition sooner, how I would’ve let myself be empowered by this disease sooner, but we all must go through those periods of development in order to come out of the other side stronger, and this is what this disease has taught me most in sixteen years. During this meeting, it was the first time I heard someone refer to the condition in the extremity I wish it was advertised as widely, “the other side of the autoimmune disease coin from cancer.” Our immune systems either over-functions or doesn’t at all.

While this may seem like a dramatic remark to those not closely related to the disease, I couldn’t help but feel my own pains over the years validated.

I am strong. I don’t stay down long, and I won’t say no to what’s possible, because I believe anything is really possible so long as we work for it. I am a realistic person. I see the tragedy in the world as much as my neighbor, but I also like to look at the good, because while the media is often consumed with turmoil, we must also remember to celebrate harmony and progress.

Everyone suffers differently, but it’s how we manage the problems in our lives that make us who we are. We can choose to be victims or we can rise and move forward. We can embrace our problems and manage them with confidence or let them oppress us, and from an early age, despite the woes of my teenage years including a lack of self-acceptance and understanding, I felt bright about my path from the beginning at my core.

I was never going to let this disease control me, and as funny as it’s been over the years to say, “I have this disease, it doesn’t have me,” there is a lot of truth in the cliché.

How we perceive our shortcomings matters. Feeling sorry for ourselves helps nothing and no one. It enables us to stay down longer, and most people managing type 1 diabetes know that highs and lows are inevitable, but we must persist forward because despite good control or management, our bodies can play tricks on us and anything is possible. Knowing anything is possible can be debilitating or empowering depending on our viewpoint. You don’t have to be “little miss sunshine” every day to enjoy life, but we all deserve to find true peace and happiness in ourselves that we so willingly give to our friends and family. We deserve that friendship with ourselves. We deserve to find that genuine self-acceptance, peace, and love, and share it with ourselves, our loved ones, and our world, and, as a result, create better communities for all.

Whining never got anyone anywhere, but actions toward purposeful change have. A few pages into a book that I anticipate greatness from, I’ve already reconciled that what makes great leaders for the type 1 diabetes community and the world as a whole, is the ability to inspire. There are product leaders that lead with product quality, a dynamic company culture, and brand awareness. There are leaders that lead by perpetuating fear. There are leaders that lead with self-serving agendas, but those who lead and do it well, do so by inspiring with whole attention to the wellness of the individual, group, and greater population.

Inspiration is easy to come by if we learn how to grasp it quickly. On the path to improve our life outcomes, it’s never easy, but nothing ever came easy in life, and what’s challenging is often worth doing. What’s “easy” is not nearly as rewarding.

I am not grateful to have type 1 diabetes, but I am grateful to be in good health and to have learned lessons from it instead of letting it hold me back.

Type 1 diabetes has given me ample grief in the past sixteen years. It’s affected my health in every sense of the word: financial, emotional, mental, and physical. It’s prevented me from pursuing and enriching relationships for fear of being perceived as a burden, not just by my partner or family member or friend, but by myself. But it’s never stopped me from growing past these common misconceptions, which they are — misconceptions.

Whoever we are, whatever we are going through, we all deserve whole and genuine love from ourselves and others. Life is simple, it’s just not easy.

If I have learned anything from having type 1 diabetes for sixteen years, it’s that exactly — the care and kindness that we show each other is truly the meaning of life. I have undoubtedly been shaped by this disease, but not into the form of deconstruction. What we do matters, though it may not seem like it. We are creating our future every day. We assign purpose and value in life. There is no one answer or one-size-fits-all model to being a human, but there is a common North Star I have seen and believe we should all strive for, and that is love.

Pursue what gives you purpose in life. Pursue what brings you love in life. Pursue these qualities within yourself. If you have type 1 diabetes, like me, or are suffering from something else as grandiose or perhaps even more so, I credit you for your hard work. Never let it get you down. Never let it control your life. Let your positive perception be a catalyst for interpersonal growth. Whether your moments are high or low, or somewhere in between, they are just that — moments. They aren’t you, and you are better than your worst times or qualities.

You are human. You are learning. You are capable of growth. You are capable of laughing at yourself in your worst moments. You are capable of vulnerability. You are capable of care and kindness. You are capable of overcoming anything. You are capable of more than you could ever know if you only find it within yourself. You will achieve your greatest goals, with advocacy for something you care about or whatever else you strive for.

Change is always possible — it’s the only guarantee we have in life.

Change.

#WorldDiabetesDay #Type1Diabetes #Insulin4All #WiInsulinPriceCap #NationalDiabetesAwarenessMonth #DiabetesAwareness #T1D

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Julia Rose

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Chronically (Br)ill

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