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We Don’t Talk About Grief: perspectives from an adult diagnosis

July 18, 2013

Diabetes is lonely. We’ve pretty much figured that one out. That’s why it’s so good to have a community of diabetics to make you feel less alone. I am grateful for my on- and off-line network of fellow Type Ones. From Bearskin Meadow Camp to Connected in Motion, to plain-old random folk I’ve met along the way, I know enough diabetics in my life to not feel alone.

And yet: sometimes when I’m in a roomful of other diabetics, I feel lonelier than ever. Here’s why: most of the diabetics I’ve met were diagnosed as children or teens.

Getting diagnosed with T1D at any age truly sucks. You face changes, adjustments, and re-learnings that couldn’t have been expected. Getting diagnosed as a grown-up is totally different from getting diagnosed as a kid. I never (thankfully) had to deal with principal’s-office insulin shots, or shitty NPH and R, or getting teased in the schoolyard, or being forbidden to eat birthday cake at a friend’s slumber party. My parents, blessedly, never had to deal with the helplessness and chronic worry/guilt that so many parents of Type 1 kids experience, as they singlehandedly have to manage their child’s dangerously fickle disease.

What I’ve dealt with instead are the things that grownups can understand.  The existential stuff. 

After 26 years of near-perfect health, my diagnosis had no place in my identity as a healthy-person.   My diagnosis spun me into a process of grief, which I am really only just now coming out of, about the existential implications of having a disease. The implication that I have failed at sustaining life on my own. Stuff like: I was de-selected by nature. I am not “fit to survive” on my own. My body attacked itself. I failed at sustaining life in my own organism.

I have done a fair bit of work now in cancer support, and frankly empathize a lot more with the “Why Me?” existential questions so many cancer patients ask, than I do with many of the lifelong-diabetic peeps I know. I have grieved many things: the fact that my body does not keep itself alive on its own any more; the fact that I am completely dependent on pharmaceutical companies to not die; the fact that I face lifelong monthly expenses that are non-negotiable, and totally not covered by my country’s so-called public health care. The fact that any pregnancy I plan on having will be a massive pain in the ass, and likely risky.

That stuff doesn’t come up in conversation very much at diabetes camp or CIM retreats. We don’t talk about grief. Maybe because most type-1 diabetics’ grieving processes happened so long ago, and manifested in ways that are typical not of adults, but of children. We talk about BG management, and exercise, and insurance; we talk about the emotional frustrations of highs and lows, of site malfunctions and of and relentless expenses. We talk about the grown-up stuff, like sex with diabetes or pregnancy with diabetes. But not about grief. Not about the existential, spiritual implications of our self-destructed pancrei. A few times, when I’ve tried to bring these things up with other diabetics, it hasn’t gone well. I’ve felt self-conscious and un-heard. I’ve felt isolated and alone. I’ve felt like I’m the only one still grieving – which is most likely the case.

Maybe it’s because they were mostly all younger when diagnosed. Maybe it’s because I’m just a sensitive artsy old soul who feels too deeply for her own good. I have met many people on diabetic retreats that I have nothing in common with aside from our defunct endocrine systems. Maybe I just need to surround myself with other therapist-types who happen to also have Type 1 diabetes.

My partner Yehuda is a self-described “doomer.” A city-raised white-boy turned organic-farmer, he walks around thinking about the potential collapse of our civilization. Those thoughts shape his actions: building up his farm as a sustainable business is only one step in his ultimate vision of living off the land in an intentional community, one that can survive through any potential collapse and be a beacon of light and love in this suffering world. He jokingly calls this future land project his “doomstead.”

Recently, Yehuda shared with me how he’s been wrestling emotionally with the paradox of both planning for collapse, and having a partner whose life depends on pharmaceutical companies. The post-collapse world he’s been anticipating and preparing for “does not,” in his words, “include Sarah Pearson.” He realizes that total collapse will likely mean the demise of pretty much most people living with disabilities and chronic illness. He has internalized, and in his own way grieved, this reality.

I am not much of a doomer myself, though when Yehuda shared this with me recently, I burst into tears. Not because I am terrified of collapse, but because he was feeling the same existential implications of this disease that I had been carrying around for three years. I don’t expect many of my friends, diabetic or not, to really internalize that existential stuff. When someone has taken the time to consider those implications, I truly see it as an act of deep love and empathy.

My best friend had her first baby a few months ago. During the pregnancy, she emailed me one day, saying that she thinks she gets it now, how hard it must have been for my body to betray me. Despite being one of the most supportive friends I could have asked for in the months following my diagnosis, I never expected her, or anyone, to truly “get it.” Now, with all the changes she was experiencing in her own pregnant body, she had the sudden ability to truly empathize with the shock and grief, and betrayal, that I had been processing since my diagnosis. She continues to send me such emails, as my reality sinks in more and more viscerally for her. I really hear it in her voice, and can trust it: she gets it.

I continue to be wildly grateful for supportive diabetic communities. Without them these past three years would have been significantly lonelier. I attribute the fact that I haven’t had any serious diabetes burnout yet to the many diabetics I now know who are just a facebook-status-update away from offering a supportive word during tough BG moments.

Just sometimes I have to think about the doom and gloom. And as three years have gone by, and I feel like the majority of my grieving process is behind me, this doomer stuff is significantly less acute. It’s still there, but integrated, much like my diabetes identity as a whole. I have to think about it though, sometimes. And when I do, there aren’t too many people to truly turn to, who truly get it. At least there are a few.

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3 Comments leave one →
  1. Tammy permalink
    July 18, 2013 6:28 pm

    I was diagnosed at age 13. I was a mature “child” and it impacted my emotional well-being greatly. However, everyone was so focused on my physical health that my emotional health was never addressed. I ended up putting up such a wall of defense against anything diabetes related negatively affecting my long-term health. I shoved all the feelings you described down into the depths of my soul for years and years. 24 years later after my husband brought my angry outbursts to my attention I sought counseling. Through art therapy I was able to address some of the grief that I had never processed. I think adults who were diagnosed as children may just be very afraid to go back to that time of diagnosis. I mean even if they don’t really remember it, it absolutely has to have an impact on the psyche. In my experience it was very painful to revisit, but definitely necessary for me to move on and be content with my life and my body.

  2. Melitta permalink
    July 18, 2013 11:48 pm

    Grieving is a big part of the shock of adult-onset Type 1. I was diagnosed with T1 at age 35, and felt the depths of despair. Now, 18 years later, I rarely despair. But one thing I would like to point out is that the VAST MAJORITY of new onset Type 1 is in adults (it is just a dangerous myth that T1 is a childhood disease). There are lots of us out here, so find the tribe!

  3. July 21, 2013 11:35 pm

    I’ve been known to grieve not only the T1 diagnosis, but an incorrect diagnosis for 33 years. The latter makes me angry and the former makes me sad, on top of the grieving. Both together raise their ugly heads now and then. There’s a measure of acceptance that has increased over the years, but I’m not sure that the grieving process every fully goes away. It just gets to an emotional level that doesn’t interfere much any more. One is reminded of it 24/7 in different situations, and in daily diabetes management. Oh right, yes, I have T1 now. It’s like a former ‘you’ that one grieves. Like a close friend who passes away, there’s acceptance over time, but the memory never truly goes away.

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