Essay

Life with Type 1 Diabetes: Finding My New “Normal” + Embracing a New Chapter

by Grace Bonney

dog walk
Last December, I started feeling off. After a lifetime of needing to be encouraged to drink water, I was suddenly downing as much as I could get my hands on. I was sleeping poorly, waking up covered in sweat, feeling both wired and exhausted and without trying, I somehow lost 10 pounds in a week. Then one day when Julia and I were at the movies, I realized I didn’t have enough energy to cross my legs.

Right after the new year, I found myself in a doctor’s office hearing the word “diabetes” used for the first time. Though at first it was used in a misdiagnosis of Type 2, it quickly corrected to my actual diagnosis of Type 1 Diabetes.

I didn’t know adults could get Type 1 (you can read about the differences here, because they are very different diseases) and the shock was real and immediate. It led to the darkest period of my life so far and, thankfully, after five months of crying, yelling, therapy, exercise, change, lots of dog walks (above) and just letting go, I’ve come to accept that this could be an invitation to one of the brightest and most meaningful chapters of my life.

This summer Design*Sponge will turn 12. More than ever, I’ve come to appreciate that Design*Sponge is a very real home for me. It has been the anchor I’ve so desperately needed at some of the toughest times of my life. And I’ve never felt this more so than over the past five months.

supplies

Above: My new everyday purse contents: a blood glucose testing device, test strips, test strip control solution, lancets, disposable needles, a journal to log how much insulin I use, two types of insulin (one long-acting I take twice a day and one short-acting I take with food 3-4x a day), an emergency glucagon shot, glucose pills for low blood sugar and extra versions of just about everything. Gone are my tiny purse days. 

When I started feeling sick, I squeezed my way into a last-minute doctor’s appointment by mentioning that perhaps this was Lyme Disease (a very real concern where we live) and an infectious disease doctor sent me to get 18 tubes of blood drawn to test for everything. He came back into the room and asked me to go downstairs to the lab to have my blood tested again to confirm my A1C.

Most people without diabetes fall somewhere between an A1C of 4.0 and a 5.5. The chart they use to depict A1C levels at the doctor’s office stops at 12. Mine was 14.

That number probably should have sent me to a hospital to check that I wasn’t going into diabetic ketoacidosis, since an A1C of 14 means my average blood sugar was over 400 on a daily basis.

What followed after that was a series of events that would not have happened without the network of friends I’ve found through Design*Sponge. Designer Sara Jensen, whose incredible son, Henry, has Type 1 Diabetes, reached out to me and suggested I ask them to re-test me for Type 1 and not Type 2. So I found an endocrinologist and two days later, he confirmed that I had Type 1 and would need to learn a new insulin regimen right away.

books

Above: All of the books and cookbooks I’ve read since my diagnosis in January. I dove in headfirst. If you’re a new diabetic or know someone who is, please start with Think Like a Pancreas, it’s my favorite.

I’ll spare you the rest of the details and say that the next month was one of the toughest I’ve ever lived. I read all of the suggested books (above), some bleaker than others, and immediately assumed the worst: that my life span had been cut by at least 10-12 years, that my dreams of starting our family were dashed (how could I take care of someone else when I can barely take care of myself now?), and that I would most likely die early and face blindness or an amputated limb along the way. I spent more nights than I care to admit bursting into tears on the couch. I consoled myself by watching Pixar movies and covering my daily shot “wounds” with Band-Aids that looked like Minions (I had a real “revert back to childhood” moment).

And then I did something that feels like second nature to me now: I talked about my diagnosis publicly. At first, I only talked about it on my personal Facebook page. And what happened next was life-changing: people reached out to me to share support, connect me to other people my age with Type 1, invite me to private Facebook groups (my new favorite thing in the world) dedicated to Type 1 Athletes and Type 1 Parents and just about every other type of person living with Type 1 you could ever imagine. Those conversations, and just watching and seeing people thrive, despite this disease, were the first moments of realizing that my life as I knew it wasn’t over — it was just one major chapter ending, and a new one beginning.

Since January I’ve had 12 rounds of blood work done, had 3 MRIs, seen 8 traditional Western doctors and specialists (I also have a thyroid problem, which often goes hand-in-hand with diabetes), a naturopath, an acupuncturist and a therapist. I know more about my body than I ever have in my entire life, and here is what I’ve learned:

  1. The human body is an incredible thing. Yes, it can fall apart and let you down, but it also holds amazing minds that dream up things like insulin and glucose pills that can save someone’s life and help you work around the parts of your body that can’t keep up anymore.
  2. Weight isn’t everything — health is. I grew up battling an eating disorder on and off for the better part of a decade and now that my focus is on health, and not weight, I feel much more connected to my body. It’s like meeting an old friend I haven’t talked to in a long time (and we have a lot to catch up on). Having to count, track and balance every bit of food or drink that goes in my body is definitely a trigger for me, but I’m getting to know what food makes my body healthy now.
  3. It’s okay to be sad and let go. From January to early March, I was pretty much the worst version of myself. I gave in to fear, anxiety, anger and every other emotion under the sun. I snapped at people. I ignored emails. I dropped projects. I cried constantly. I thought about nothing but my blood sugar numbers and what I was afraid of. But you know what? That’s okay. Because I let myself really go there, now I feel ready to let that moment go and work on embracing a more positive outlook.
  4. I learned to ask for help. Whether it was letting my wife hold me up (sometimes literally) when I felt like I couldn’t take it anymore or just asking my team to take over some of my work while I focused on healing, I was so buoyed by the people around me who let me know it was okay to take the space/time/support I needed.
  5. There is no perfect health zone. I’m a classic Type A person, and when I was diagnosed I decided I would be the “best” Type 1 Diabetic ever. I would get “perfect numbers” in three months, eat the strictest diet ever and work out every day. And I did all that. But you know what? That’s not realistic. There will be days when I can’t “beat” diabetes no matter what and there will be days when I need to treat myself and not focus on only eating things I know I can control well. Life needs little moments like that to stay sane and right now, the only path to staying happy I can see is one that embraces ups and downs and doesn’t try to turn them into a perfect straight road.
  6. Technology is amazing (and scary): I basically carry around a few small devices at all times now (to monitor my blood sugar) and next week I’ll start wearing one of these, that’s attached (and partially embedded) on my arm all the time. Eventually, I may end up on an insulin pump if that works best, but learning about the amazing — and slightly overwhelming — things technology can do to keep you safe and alive is pretty incredible. I’m still struggling with feeling like all these devices make me feel like a robot, and not a human, but I think I’ll get there eventually and feel more comfortable.
  7. Last and most importantly: LIFE CHANGES. We think we have it all figured out and then it reminds us, “Oh you think you know who you are? And what you do? And what it all means? I’ll show you…”

You would think that after working online in the most up and down market ever (does the Internet ever sit still for just a second??) I would understand and embrace this, but I haven’t. There will always be a part of me that wants to just stop and sit still for like, a year. I want the Internet, blogs, life, health and everything to stay exactly the same so I can adjust and get used to it and get into a groove. But that’s never going to happen. And if a disease that is literally all about getting used to highs and lows doesn’t teach me that, I don’t know what else will.

So what does this mean going forward? It means that I’m making some changes here at Design*Sponge. Since day one, I have pretty much run Design*Sponge in the exact same way: sitting behind a laptop, on my couch, cranking out email after email, post after post, responding to questions/ideas/demands/complaints in the comment section and on social media and spending countless hours researching and writing posts and soaking up as much design and inspiration as one person can possibly manage. And I’ve loved every second of it. I’ve loved this way of working and loved the accompanying sedentary lifestyle (I wore my busy couch potato badge with pride). But that’s literally not an option for me anymore. I need to stay healthy, fit and active to keep my body and my diabetes as close to in control as possible, so sitting still on a couch for 10 hours a day just can’t happen anymore.

In addition to the physical aspects, I’ve found that talking to more people face-to-face over the past five months has drastically increased my happiness and ability to balance all of these new challenges. And I want to keep feeling that way — upbeat, positive and connected.

So, starting now, I’m moving myself into a more traditional editor-in-chief role here at D*S. I’m going to be focusing on a few projects I’m incredibly passionate about: my podcast, an in-person event series and our first magazine. These projects will allow me to travel, meet people face-to-face, talk about more personal issues and will allow me to write more about the things I love here: connections, personal stories and big life issues.

But don’t worry. I’m not going anywhere. I’ll be here each and every week writing posts, responding to comments and talking on social media, but I’m going to give myself permission to write a new chapter of my own life and new chapter here at Design*Sponge. One where I go after the things I want and trust the incredible team we’ve spent years building to help me steer the ship and keep us on course. And with that newfound freedom I’m going to work on discovering new versions of myself I didn’t know existed. Versions that are strong and active and healthy, and versions that might actually come to enjoy change, and versions that let me dream bigger and better than I ever new I could. And the first step in that process is sharing these thoughts here.

Thank you for listening, thank you for your support, and, if any of you out there are living with or were recently diagnosed with Type 1, please know you’re not alone. I’m always happy to talk, share anything I’ve learned or connect you to the amazing people who’ve been so helpful to me over the past few months.

All my love,
Grace

*My podcast will be back this summer and this time around, I’m doing micro-themes: 3-4 episode arcs with a single theme. To kick things off, I’m interviewing designers and creatives across the country who are living, and thriving, with chronic diseases. It will be an open, honest, difficult and motivating look at real life with real hurdles. 

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Comments

  • I am new to your site(yeah I know?) I was diagnosed with Type 2 diabetes in my late thirties. I am now in my late fifties. I became insulin dependent about 10 years ago after not taking care of myself. I was in denial for a long time, and then like you my A1C came back at 13. I cleaned up my act, eat a lot of plant based foods plus exercise and now in really good health. You just have to keep plugging away at it every day. Life is wonderful and diabetes is doable. The disease sucks but there is so much help available now. I know you know this but you will be fine.

  • I was just sent this article by someone in a Facebook group – and can relate so much. I was just diagnosed Type 1 last October at 32 years old – I went into DKA. Thanks for sharing this publicly. I have been hearing more and more of late onset Type 1 and it’s great to read other’s experiences.

  • I’ve been reading DS since 2006 and have loved every iteration of it. The deeper you go with design, life, home, etc, the more I can’t wait for each time I check in! You are so strong, and I love the way you’re looking at this diagnosis as a new chapter and a new call to be your best self, rather than an unrealistic ideal.

    I’m so excited that you’re bringing back the podcast, too! After the Jump is such a huge inspiration, I love the the conversations you have there. I still re-listen to my favorite episodes all the time. I’m sure you already have your artists selected for your first arc, but Emily Barletta is definitely someone who you should check out if you haven’t already :)

  • I’m a little late here, but wanted to let you know about my mum. She’s had type 1 diabetes for over 40 years (she was 20 when she was diagnosed). Sometimes she eats chocolate. She had an issue with her eyes that required some laser surgery but a good diabetic specialist will ensure that any eye abnormalities never get severe enough to cause any kind of vision impairment, likewise with nerve damage. By the time you’ve had diabetes for long enough for any secondary issues to take place they’ll probably have found a cure! Oh, and she had me at 31 – I was a pretty huge baby (it happens with diabetic mums) but she managed to keep her blood sugars relatively stable and raise me for 18 years. Okay, 32 years. She’s still raising me haha.

    So sure, it’s a total bummer having to give yourself shots multiple times a day, but it’s not going to get in the way of your life if you don’t let it. My mum’s a testament to that.

  • Like Nic I’m latecomer to your beautifully honest and considered post.

    I can really empathise with you in terms of the emotions you go through when receiving a life-altering diagnosis.

    Born with hearing loss I’ve only ever known life with hearing aids and find it completely normal that my hearing trails off every 5 days and needs a new battery to get it up and running again. Being part robot in this sense is great for me and enjoying being able to literally ‘switch off’ when on the train to work.

    My hearing loss never bothered me because its always been that way. It’s when things change that it’s tough.

    I was a very active child doing 5+ sports a week but slowly started dropping activities because I felt so tired all the time. I blamed myself for being lazy, my mum left me in tears at a trampolining class once because I just felt incapable of doing ANYTHING. I was sleeping in till early afternoon and it got so even walking up the stairs felt like too much.

    After developing another severe and rare symptom I was diagnosed with a severely under-active thyroid and will be taking pills to regulate this for the rest of my life.

    You eventually work through all the problems and emotions and stabilise and continue. I then got hit with another life altering diagnosis – a very rare condition called Usher syndrome.

    It turns out my hearing loss is actually a part of Usher syndrome combined with it’s sister condition Retinitis Pigmentosa meaning that I am also now slowly losing my sight.

    I was diagnosed aged 16 and I’ve always been a very driven creative person and had planned to go to uni to study fine art. This was such a horrible time for me. I felt like I should study something else sensible that I could do with sight loss.

    I’m so glad I didn’t give in to that feeling.

    Instead I switched to Silversmithing, Goldsmithing and Jewellery Design and graduated with 1st class honours. I’ve worked at the bench for an internationally renowned jeweller and now as a jewellery and luxury goods designer for a prestigious company in Mayfair, London.

    I won’t be able to do it forever, I’m now 27 and each year it gets that little bit harder. But I love my work and treasure each and every time I get to design something unique and beautiful that someone else will appreciate.

    One day I’ll have to switch tack and I hope I will find as much opportunity and fulfillment out of whatever the next chapter holds as the last one has.

  • Similar story to Nic’s. My mom has had Type 1 Diabetes for almost 60 years now (she got it when she was 8.) She had me (a whoppin’ 9 pound baby) at 37, and still has all of her limbs and eye sight, and the energy of a 21 year old.

    Now don’t get me wrong – she has had blood sugar episodes for as long as I can remember, but she’s prevailed by staying knowledgable about her disease (she pursued a career in educating family members of her diabetic patients) and most importantly, letting the people around her take care of her. She sat me, my sister, and my brother down when we were very little and told us how we can know if her blood sugar is too low, and what we can do to help her. That’s right – I knew how to test my mom’s blood sugar as an 8 year old.

    I wanted to share my and her experience with the disease, because I think of it as a very positive thing. And I hope you can take a little piece of encouragement from it.

    Sending so much support and love from San Francisco!

  • Thank you for writing this! It’s hard not to feel so low sometimes with Type 1, I’m going to look into some of your books you took a picture of :) you’ve inspired me :)

    Angela
    Ps. You’ve figured out how to be in control, just keep reminding yourself when times are tough and you’ll get through. I try to take my own advice most days ;)

  • Hi. I just heard your podcast on grow big always and appreciated what you had to say about diabetes. I was diagnosed t1 at 30. I not only am grateful that it came at a stage where I was mature enough to make good decisions (and that my mom didn’t have to deal with it) but also that I could find some blessings in it. It totally sucks but have you ever watched a scary movie or undergone a stressful situation while wearing a cgm? It’s like eating a bowl of sugar. I used to be a lot more anxious but because I could see how it effects me I can let most things pass without getting stressed about them. If I’m going to mess up my blood sugar it’s going to be for a chocolate chip cookie not because of some day to day bs. I’m 8+ years in. I had a baby, I nursed him for almost three years. I work full time. All of that is impossible. So is managing t1d but you do it because there is nothing else to do. Good luck.

  • I am an artist and illustrator. Design Sponge starting following me on Instagram and I was so encouraged. I posted an illustration today about hope because my 17 year old son was diagnosed with type 1 diabetes 3 weeks ago. Someone liked my picture who was followed by you. I ended up finding this article. My son is handling it well. It is a hard diagnosis and came as a shock. It is encouraging to find so many people living successfully with T1D. Thanks for sharing your story and continuing on with Design Sponge.

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