Ask for Help or Do It Yourself?

the willingness to be vulnerable & announcing a new Substack

This essay was first posted November 2023, and this repost is one of several introductions to a new Substack, The Type 1 Diabetes Dilemma. The first T1DD post appears next Wednesday, but the About and Coaching pages provide the basics.

For a long time I rarely acknowledged I had type 1 diabetes (T1D) to anyone outside immediate family and friends. I just “did it myself” and didn’t ask for help. That was a lonely place. Happily, I no longer live there.

At this point in my life I have something to offer people living with T1D as a coach. I’m an advocate for attending to the mental, emotional and spiritual wellbeing of people living with T1D, and of course, that applies to anyone living with a chronic condition.

The reality of managing a dynamic condition like diabetes depends on so many variables for success. I have health insurance, health care providers I trust and access to the medical equipment and supplies I need to manage this complex condition. Much of that is the result of some luck, of being born white and middle class, having access to education, transportation, the internet, healthy food and more.

I was diagnosed with type 1 diabetes (T1D) in 1993. At the time I was also in recovery from an eating disorder (bulimia) and in the middle of an abusive marriage. Despite the circumstances, I still believed I had to manage this condition by myself without asking for help or support from friends and family.

In previous posts, I spoke about the flash of insight that substantially changed how I managed my self care. I knew if I was going to thrive with this condition I needed to understand how diabetes acted in my body, and I had years of experience grappling with and healing from an eating disorder to guide me, including a strong mindfulness practice. It was an empowering moment.

I clearly saw a path forward, but it never occurred to me that anyone beyond my medical team could accompany me. I briefly looked for support groups but they were few and far between. I never labeled myself a diabetic, and never looked for folks with T1D, though when I accidentally bumped into someone it was so comforting, like coming home—a deep experience of being seen—but still, it never prompted me to seek companionship on the journey.

When my son was a teenager, we went to a mall to buy something he wanted. After a fruitless search took us from one end of that endless mall to the other––twice!––he turned and began walking again. In desperation I said, “Are you going to drag your poor, diabetic mother all over the place for this thing?!” I was kidding of course. I never referred to myself as diabetic. He knew I was teasing, but he stopped and gave me a funny look, as if what he was going to say had just occurred to him. “You know, mom, I never think of you as diabetic.”

I melted. I didn’t care if we walked back and forth to the moon after that. I was so happy he didn’t feel burdened by my diabetes and the day-to-day care it required.

Taking care of my diabetes without “burdening” others was my secret goal for years. I tested blood sugars and treated lows out of sight without alerting anyone. In new situations, I rarely disclosed I had diabetes, in part because telling people often meant hearing about the alcoholic uncle who had both legs amputated, the sister who spent her adolescence in the ER and was now on kidney dialysis, or the co-worker who regularly passed out in his cubicle because he “never paid attention to his blood sugars.”

I internalized those stories as stories of personal failure. My conditioning to shame and blame myself—which I did for years with bulimia—appeared again in a new context. The responsibility to fix this was firmly on my shoulders alone. I didn’t want to be someone who “never paid attention” leaving others to deal with the consequences of my poor self-care. During my first visit to Joslin Diabetes Center in Boston, MA, after seeing so many older people shuffling with walkers and canes, I vowed I wouldn’t be “like them” either. 

The judgment masked shame as well as my terror of diabetes complications. If I managed T1D so people didn’t even know I had it, I could pretend I was in control and would never have complications. I trained friends and family to “stop worrying” when maybe it would have been a good idea to do so, or at least keep an eye on me in certain situations.

All that self-reliance made an invisible condition even more so. For a long time, taking good care of myself meant doing it by myself with as little help as possible from anyone other than my medical team.

Hyperawareness and fear of complications kept me on track with self-care in those early months and years as I struggled on the learning curve of managing diabetes, but the underlying judgment was an added burden. Why did “taking care of it” mean not asking for help? Why did I believe that needing help, either in the present or in the future, was a personal failure? Because I was primed, as many of us are, to believe we’re responsible for ourselves.

Caring openly for myself, without shame, as a person with type 1 diabetes—or someone with any chronic condition—is a balancing act. Sometimes I don’t want to navigate thoughtless, intrusive questions or other people’s stories about friends and family who struggled with the condition, but I’m open to educating people, and I’ve gotten better and gently saying I don’t want to hear that story about uncle Joe right now. I’m more at ease simply doing what I need to do in public, like testing blood sugars or checking my insulin pump. I ask for help more often, and let people know I have T1D in situations were the need-to-know is important.

The result of my willingness to be vulnerable (when I can) is a wider support network aware of my needs, the ability to check judgement, and more discernment/wisdom regarding what is the right action for me in any given moment as well as the strength to follow through.

You know what you need to do for you. Do it with kindness and ask for help when you need it, and maybe even when you think you don’t.

Beside being a passionate writer of this bi-weekly Substack newsletter, I’m also a life coach helping clients realize transformational change. I also offer emotional wellness coaching to people with type 1 diabetes and help them develop wellbeing practices based in mindfulness. If you would like to know more schedule a free discovery session, find me on LinkedIn, or message me through Substack.